16 posts from February, 2016

“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

Posted February 29th, 2016 by

 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.

This year’s theme is all about elevating the patient voice, so we caught up with member Ann (annpkerrigan) to learn more about what it’s like to live with alkaptonuria (AKU), a rare disease that affects 159 PatientsLikeMe members. Here’s what she had to say…

How would you describe AKU to someone who has never heard of it?

I suffer from AKU, which is a rare genetic disease with no cure or treatment but not fatal. This is what I was told six years ago when diagnosed after many years attempting to identify my condition. AKU is a metabolic disease, which causes severe early-onset osteoarthritis. It can be a painful and degenerative disease.

Over the years, I’ve learned to adapt and make changes to my home. I live alone and it’s crucial I can manage everything. Prior to diagnosis my knees were very painful so I moved to a ground floor apartment in Bristol to be closer to work and because using stairs became impossible. My GP referred an occupational therapist to assess my home and she provided equipment to help, like a sock aid and a long-handled comb. She also authorized the council to install a wet room, which provided safety and independence. When my shoulders deteriorated it became painful to change gears when driving so I was able to get an automatic car through the Motability scheme in the UK.

How has your life changed since your diagnosis?

A major problem was washing my hair because I was unable to hold my arms up for any length of time, so I’ve been going to a hairdresser weekly for years. I’ve also lost three inches in height because my spine’s compressed. I’m only five feet now, so I’ve had shelves lowered in my flat and I’m currently saving to adapt my kitchen.

As for work and social life, everything’s changed. I haven’t worked since diagnosis, which coincided with redundancy because of my disease escalating. I contacted The AKU Society in February 2010 and was invited for three days to undergo tests to aid research and to help me. The trip was wonderful because I met experts who understood my disease and I no longer felt isolated. The tests revealed a lesion on my chest and I was referred for a CT scan, which identified a 9cm tumor tucked underneath my breast bone – beside my lungs and heart – which had to be removed. I wasn’t symptomatic and it was thanks to Liverpool this was identified!

The main problem I face is financial. Having left work at 50 I’ve lost a good income and standard of living. I’ve also spent my redundancy on emergencies like a new washing machine, refrigerator and to supplement my income, and have lost 15 years of pension contributions. However, the worst part is knowing there’s no cure, and trying to come to terms with it.

However, the AKU Society’s been brilliant, as has peer support, and I’ve been surgery-free for more than two years. But moving forward, I’m having a right hip replacement in March and carpal tunnel surgery in May. My social life is very different now because there are activities I can’t participate in, and although I’ve always loved to travel this is also difficult now. Essentially, my life has completely changed and while I try to remain positive and independent I sometimes suffer from depression.

What changes do you think need to happen in society to raise awareness about rare diseases like AKU?

AKU is largely an invisible disability – patients look perfectly normal on the outside. I have a blue badge for parking because I need the extra space to get my legs out of the car, and because I have a problem walking, but I’ve been shouted at for parking in a disabled space because I don’t fit the stereotype. So I’d like to see a campaign to highlight the difficulties of invisible disabilities. The government hasn’t helped either because they’ve targeted vulnerable groups in society and labeled the disabled as fraudsters. Families of AKU patients need support, too, and could help each other if a group was established or a forum available.

How can healthcare become more compassionate towards patients with rare diseases?

I’d like to see every newly diagnosed patient given counseling and have an AKU buddy for peer support.

Rare diseases like AKU are known as orphan diseases because they affect a small percentage of the population. As a result, they lack funding and largely remain unknown to government, medical practitioners and the general public. I would love to see a campaign to educate government, medical practitioners and the general public about invisible disabilities and rare diseases. I’ve been involved in teaching third year medical students for the last three years so that they’ll know how to identity AKU earlier and to think outside the box!  Medical practitioners need to listen to their patients and if a patient reports something that doesn’t easily fit a diagnosis, this could be the red flag pointing to a rare condition.

I think patients will start to receive better care once doctors listen and respond quickly, which will come about through teaching, improved resources, funding and changing the mind sets of the public and government. I’d also like to see more partnerships between patients with rare diseases, medical practitioners and government because we are the ones that know what is required to give us the care we deserve. Therefore, we need to educate and inform all the key stakeholders so that they too will become advocates.

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2016 National Compassionate Caregiver of the Year Award now accepting nominations

Posted February 26th, 2016 by

A warm smile. An assuring word. A difficult message delivered with empathy. Has a doctor or other healthcare professional ever made a difference in your life? If you know someone who embodies compassionate care, our partners at The Schwartz Center for Compassionate Healthcare want to hear about it.

Their National Compassionate Caregiver of the Year (NCCY) Award recognizes those who make a profound difference through their unmatched dedication to compassionate, collaborative care – or as Ken Schwartz has said, whose “acts of kindness have made the unbearable bearable.”

Last year we profiled all six finalists, including Rick Boyte, MD, who received the award. At the Annual Kenneth B. Schwartz Compassionate Healthcare dinner in Boston, Dr. Boyte spoke of his patients and their families while accepting the honor, “They are my heroes and the most courageous people I’ve ever met. They’re just getting through their lives. And the love and devotion I’ve seen from families is amazing.”

For this 17th annual year of the NCCY Award, you and others once again have the chance to put forth the name of a caregiver whose caring and compassion has made your health journey a better one.

The nomination deadline is March 31, 2016.


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Touched with fire: Harnessing the fire of bipolar

Posted February 25th, 2016 by

Over the last few weeks, new PatientsLikeMe member Paul has been opening up about living with bipolar and how this condition inspires his art. Touched with Fire, a debut feature film now playing in select theaters, was written, edited, directed and scored by him and draws on his personal experiences.

Discovering Kay Jamison’s book of the same name gave a new meaning to his condition when he needed it most. With the management of his bipolar now a finely tuned process, Paul says the most important thing is to “learn how to thrive in it. Not just get by in it, and not to be destroyed by it.”

Here’s what Paul has to say:

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Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe.


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Meet Cyrena from the PatientsLikeMe Team of Advisors

Posted February 24th, 2016 by


Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology.

Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses.

Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered.

What gives you the greatest joy and puts a smile on your face?

Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle that I have faced living with chronic illness has been getting through graduate school successfully (and in one piece!) I believe that making higher education, particularly graduate and professional education, more supportive of students with chronic illness would require that institutions recognize that chronically ill students are willing and capable of completing a challenging degree. Completion, however, requires that colleges and universities be able to provide appropriate medical and psychological support, and if they are unable to do so directly, facilitate access to these resources through disability support offices. Most importantly, chronically ill students need to KNOW that these resources exist and that people around them are confident that they will be able to succeed.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Waking up everyday and not knowing what that day will feel like. Today I may be able to roll right out of bed and get on with my day, even though it feels like I’m swimming through a vat of molasses. Two weeks from now it could take me four hours to get out of bed, take a shower, and go back to bed again because I simply am too depressed to face the day. But no matter what’s happening, more often than not no one else can see what’s going on. That’s every day living with invisible illnesses.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become an expert! No one knows more about you than YOU do. But also learn as much about your illness(es) that you can, so that when you communicate with your physicians and other healthcare providers, you have a better chance of understanding what is going on before you leave the office.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has actually been more important to me to find people living with other chronic illnesses than finding people with my specific illnesses. I find that within particular illness communities there is a tendency to fall into a cycle of comparison — both positive and negative — rather than support. In meeting people with other chronic illnesses, I have been able to share general survival tips and identify ways in which the chronic illness experience can be improved for all members of society.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I believe that I advocate for myself whenever I have an interaction with my physicians. I come in with a specific set of questions and concerns and make sure that the appointment doesn’t end until we have at least talked about them. Short of emergency situations, I don’t believe that anything involving my health is a unilateral decision. And I make sure to get copies of anything I ask for, even if they grumble about it.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It was PatientsLikeMe that introduced me to the concept of tracking my moods online, then other health parameters like medications and quality of life. I now have over seven years of Mood Map data online. It gives me the opportunity to go back through my history and compare external and internal factors between past and current mood events. When I first started using PatientsLikeMe, I was a more active member of the community forums, and found it immensely helpful when I needed somewhere to turn with the aches and pains of everyday life with illness.

What is your favorite type of pet?

Cats, hands down. A cat is introverted and sometimes standoffish, but (s)he’ll be your best friend if you put in a little effort.


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Leaning on loved ones—An interview with lung cancer member Clare

Posted February 23rd, 2016 by

When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before.

We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

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Food for Thought: A heart-healthy recipe for Heart Month

Posted February 22nd, 2016 by


February is Heart Month, a time to raise awareness for the leading cause of death in Americans: heart disease. Healthy eating can lower your risk for heart problems, so for this edition of Food for Thought, we’re sharing a recipe from the American Heart Association. Give this Thai chicken soup a try — it’s is both heart-smart and tasty.


Slow Cooker Thai Chicken Soup

  •  2 lb. boneless large chicken breasts
  • 14.4 oz. packaged onion and pepper stir-fry mix
  • 16 oz. packaged white mushrooms
  • 1/2 (13.5-ounce) can lite coconut milk
  • 4 cups low-sodium chicken stock
  • 2 Tbsp. lime juice
  • 1/4 tsp. red hot chile flakes
  • 1/4 tsp. salt
  • 1/4 tsp. ground black pepper
  • 10 oz. packaged frozen peas
  • 1/2 cups fresh basil or cilantro leaves
  • 4 oz. raw rice vermicelli noodles, roughly chopped or broken
  • Asian hot sauce like Sriracha, to serve, optional


  1. Place chicken into a large slow cooker. Add stir-fry mix and mushrooms. Pour coconut milk and chicken stock over the mixture. Cover and let mixture cook on high heat for 4 hours or on low heat for 8 hours until chicken is tender.
  2. Before serving, turn the heat to high if it’s on low. Use tongs to transfer chicken to a bowl. Stir lime juice, chile flakes, salt, pepper, peas, basil, and vermicelli noodles into slow cooker, making sure the noodles are mostly submerged in the liquid. Cover with lid and cook until noodles have softened, about 20 minutes.
  3. Carefully transfer hot chicken to a cutting board and cut into bite-sized pieces. Stir back into the soup. Ladle soup into bowls and serve with hot sauce, if desired.

Do you have a heart-healthy dish you like to make? Share it with the community!

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Meet Doug from the PatientsLikeMe Team of Advisors

Posted February 19th, 2016 by

We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008.

Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of his biggest challenges has been opening up about his depression. He believes that MDD isn’t talked about enough in society: “We’ve got to figure out how to encourage the sensitivity and understanding.”

Here, Doug describes a vivid picture of what it’s like to live with depression and offers some advice to other patients: Find others living with your condition, and know that you’re not alone.

What gives you the greatest joy and puts a smile on your face?

My kids, their antics and achievements, their growth, even their mistakes, are what get me up in the morning. Drawing closer to seeing or speaking with them is probably my greatest motivator. It’s funny, though; I wouldn’t label what they bring as ‘joy,’ per se. When you’re living with chronic Major Depressive Disorder, and when you’re treated with an affect-flattening medication like lithium, joy all but falls out of your vocabulary. But my kids are definitely the closest I come. My extended family, my girlfriend, creating theatre and my faith all fall in close behind.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Perhaps the greatest obstacle I’ve had in living with depression, aside from considering self-injury or enduring an episode itself, has been personally and openly admitting that I suffer from what society and medicine deem a “mental illness.” Though it may help some folks (docs) with classification, I usually find it a fairly useless, divisive, overly-general, stigma-laden label. Yeah, it may be practical to use medical terms to initiate basic understandings, but I now try to move other folks I affect or who affect me past the crappy designations and into how the disease (and the medication/side effects) actually manifest themselves in my life. Moving past the ill-connoting “mental illness,” with its lurking suggestions of some sort of moral turpitude, loss of touch with reality and personal weakness or inability to perform/produce, I go into the specific realities of this dad’s/teacher’s/actor’s/partner’s life: how I deal with occasional flat effect, distraction and crying episodes; what Electroconvulsive Therapy actually consists of and why it had to be administered to me; and the prescription side effects like word-fishing, tardive dyskinesia and even ED.

When people are moved past the general and abstract toward the specific and concrete, I think we begin to enter productive territory and can make inroads. We’ve got to figure out how to encourage the sensitivity and understanding that come with specificity.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I’ve tried for figurative examples of “normal” human experience that people could magnify and see themselves in, but it usually doesn’t work. I often simply describe my own experience…

Imagine a trained general practitioner making fun of you for your “pretend” gut ailments, asking if you want to “man up” or whether he should prescribe you some Prozac. Imagine trying to choose the former when what you really need is the latter. Imagine suffering the consequences of foregoing treatment…

On the slide down, imagine crying in four-hour stints. Imagine trying to convince your three kids that Daddy’s crying has no relationship whatsoever to them, to what they’re doing, to their innate value or to your profound love for them. Imagine being so distraught that you don’t sleep for a month. That you forego food. That you lose 30 pounds.

Imagine not wanting to wake up. Ever. For weeks. And Imagine feeling that way even when no horrible incident, no traumatic scene, no injury had prompted it. Imagine never wanting to wake up, and for no particular reason.

Imagine not wanting to bathe. Imagine deriving no comfort from the warm water streaming down your body on a cold winter’s day in the shower when you finally get there (you’re mother’s been urging for a couple days now, and finally actually led you by hand into the bathroom).

Imagine finding yourself on a psychiatric ward, where they’re weaning you of meds so as to treat you with ECT. You learn your parents delivered you there (you’re 49 years old and live some 10 hours from them); you don’t even remember them delivering you (motivated forgetting).

I could go on, but I think this gives you an idea. Folks who haven’t done significant time with depression probably don’t understand these illustrations, but they may find a point to connect, or, at the least, be struck by such a profoundly different human experience. These examples, if nothing else, begin to point at the devastation depression creates.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Get armed with info and understanding. Do your homework. Find real, live people like you who deal with the same condition. Talk with them, listen to them, come to see that you don’t stand alone and that there are others who understand. Internet is good, but real life is better. Dive into your faith.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has done three major things for me. I had been logging basic baseline mood and other information on a smaller website when I learned of PatientsLikeMe. The stuff I’ve laid into the site chronicling my illness over the past eight years has served as a solid longitudinal record of the trajectory of my depression and PTSD, a record arguably more significant to me than my formal medical records. In addition, PLM has provided community; through site content and interaction with my fellows, I’ve gained insights and support. I’ve also been able to offer my own impressions and understandings in public forum, and, finally, through working on the PLM Team of Advisors, I’ve been prompted into deeper advocacy and peer support.

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Touched with fire: A meaning behind the suffering

Posted February 18th, 2016 by

We’ve been talking with new PatientsLikeMe member Paul, whose debut feature-film, Touched with Fire – inspired by his experiences living with bipolar – opened last week in select theaters. 

For Paul, the road to diagnosis was more like being on a rollercoaster. Years of using marijuana seemed to stimulate his creativity at film school, but culminated in the manic episode that would shape the rest of his life. His diagnosis was not the divine revelation he interpreted it as, but the triggering of a lifelong disease: bipolar disorder.

Here’s how Paul describes this time in his life:

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Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe. 

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National Donor Day: Changing lives on both sides

Posted February 14th, 2016 by

“Be Mine.” It’s the mantra of Valentine’s Day, but today we’re honoring those who’ve said, “Have mine.” February 14 is also National Donor Day, and it’s all about recognizing the most precious valentine of all: the gift of life.

For every organ, tissue, marrow, platelet and blood donation, there are two sides to the story. Check out how two PatientsLikeMe members describe what it’s like to be offered another chance at a life, and how it feels to give that opportunity…


Life after a lung transplant

“I have a new normal now, but that is ok because I CAN BREATHE! It is something most people take for granted until they can’t. I know I did. The first year after transplant is rough to get the meds right … the frequent bronchoscopies. I had a setback with CMV virus and have had GI problems (med side effects) but have gotten it straightened out. In three weeks is my one-year birthday and I am positive I would not be here now if I didn’t get my new left lung.”

–       PatientsLikeMe member

The memory of her father lives on

“When my dad passed away, nine people were given a new lease on life from him!  We received several letters from family members. Most very simple thank yous and a little about the new life the recipient has now. Those letters mean the world to me, even all these years later. It’s like Dad lives on in the joy others now have.”

–       PatientsLikeMe member 

How can you help?

Every 10 minutes, a patient is added to the organ donor waiting list. So what can you do? Register to become an organ or tissue donor, find a local blood or platelet drive or join the Be The Match national bone marrow registry.

And if you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe.


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“Hope makes us strong.” – An interview with ALS caregiver Cathy

Posted February 12th, 2016 by

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope.

We took time to connect with her recently and this is what we learned… 

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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Meet Paul, an artist “touched with fire”

Posted February 11th, 2016 by

“I’m a filmmaker, husband of my NYU film school classmate, father of two children and bipolar. Of these labels, the one I’m certain stands out in your mind is bipolar – and not in a good way.”

Being bipolar is not something that new PatientsLikeMe member Paul has ever tried to hide. On the contrary, he sees it as a gift that has fueled his creativity. Paul has written, directed, edited and scored a feature-film debut inspired by his experiences with bipolar disorder. Touched with Fire, starring Katie Holmes and Luke Kirby, opens tomorrow, February 12, 2016, in select theaters.

Paul received his diagnosis at age 24 when he thought a manic episode was a divine revelation. What happened after that illuminated the path his life would take.

“I was thrown into a hospital, pumped full of drugs and came down only to be told that I wasn’t experiencing anything divine; I just triggered a lifelong illness that would swing me from psychotic manias to suicidal depressions with progressive intensity until I would most likely fall into the 1-in-4 suicide statistic – unless I took my meds, which made me feel no emotion.”

Refusing to accept what every medical text seemed to tell him – that is, if he stayed on meds, he could live a “reasonably normal life,” he discovered Kay Jamison’s book, Touched with Fire. It’s the first medical text that connects bipolar and artistic genius, profiling some of the greatest artists in history, including Vincent Van Gogh, Lord Byron and Virginia Woolf.

“For the first time, I heard words, shining right through every medical book’s thick printed clinical ink, describing something I could be proud to be. I was like, Yeah, that’s what I am. I’m ‘touched with fire.’

Just as it would be destructive for him to deny “all four seasons of the bipolar fire,” he says that “it would be unwise for a doctor to deny that on those manic summer nights, when we look out our hospital windows, we can see the stars pulsing spirals of fire across the sky, as God lifts the veil and unfolds the entire universe before our eyes.”

If doctors and patients partnered better and trusted one another, Paul asks, “How much more receptive would a patient be to treatment if the patient was told that the treatment was to nurture a gift they had, instead of terminate a disease they had?”

He often references a quote by Vincent Van Gogh, who conceived the beloved “Starry Night” painting while gazing out a sanitarium window: 

“What am I in the eyes of most people? – a nonentity, an eccentric, or an unpleasant person – somebody who has no position in society and will never have; in short, the lowest of the low. All right, then – even if that were absolutely true, then I should one day like to show by my work what such an eccentric, such a nobody, has in his heart.”

And so, like a true artist, Paul is using his gift – that fire – to change the way people think of bipolar disorder and to encourage others “touched with fire” to harness the power of their gift.

Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe.

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Meet Peggy from the PatientsLikeMe Team of Advisors

Posted February 10th, 2016 by

Say hello to Peggy, another member of your 2015-2016 PatientsLikeMe Team of Advisors. A survivor of both kidney cancer and Stage II breast cancer, Peggy believes that most of us are “ill-prepared to be ill,” and that better health education can lead to better outcomes.

After years of teaching and volunteering, patient advocacy has come naturally to Peggy. She’s determined to teach others about their treatment options, and writes a blog covering new studies. Her goal is to empower patients to approach their doctors with more confidence.

Here, Peggy touches on how she overcame survivor’s guilt and the challenges of navigating the healthcare system.

What gives you the greatest joy and puts a smile on your face?

In front of me is a bulletin board of picture, heavily featuring my two young grandchildren and a few of my own five children. The sheer joy of seeing my family grow up is in sharp contrast to the realization I could have missed it all, had I not had excellent care of my kidney cancer. In gratitude for what had been given me, and in appreciation for the sacrifices others had made, I am determined to teach others about their kidney cancer and their treatment options. I was horrified to realize that many patients were not only late in being diagnosed, but also receive substandard care. This is generally due to lack of knowledge and I knew that I could educate patients to pursue the best care. This new role as patient advocate seemed to be a natural extension of my life’s work as teacher, mother and community volunteer. I can only hope that other patients can continue to be a part of their own families, thanks to the work that I do.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My condition is now that I am a healthy person. Except for scars and CTs, no one would think I had been ill. That permits me to examine challenges that patients face as they come to deal with their illnesses, and how our society’s expectations and the convoluted health system limit patient outcomes. For example, people rarely learn how to be effective patients, and are ill-prepared to be ill! They have been taught to be passive in healthcare settings, have not learned how to assess the information given them, and have no experience in navigating a complex health system. Further, they are asked to trust in doctors who do not communicate well, assess conflicting information, and of late, encouraged to be “their own best advocates,” but without any training to do so. Of course, this is usually done at the time in which the patient is most vulnerable!

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My kidney cancer and my “long-term remission” is an example of what is happening in cancer care and research today. It is a story of great advances in research, hampered by a grim history with its negative expectations, and the time constraints in modern medicine. Though the tools we have at present can reveal the cancer at an earlier stage, or offer more ways to destroy the tumors, we have a very uneven usage of those tools. Rarely is care integrated, with medications sequenced with surgery or radiographic ablation. The typical diagnosis is inadequate, yet that drives treatment into a guessing game, with dire outcomes all too likely. Again, this does not have to be, as simply providing treatment that reflects the recognized guidelines would improve outcomes. Those guidelines can provide basic care, but using all the information now available, and doing so in a timely manner, could change kidney cancer statistics dramatically.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

I would recommend that the patient first understand as much about his own general health condition as possible, recognizing any special challenges. What the patient brings to that party is as important as the diagnosis in treating the disease. Next would be to learn as much about the new condition, and assess whether the diagnosis is complete, or indeed, correct. There are many conditions which are described in “typical” terms, and to understand where the patient fits or does not fit is valuable information, most likely to come when the patient understands the disease and his own situation.

Next would be to learn to say, “I am the kind of patient who wants to learn everything about my disease and how to deal with it. I will probably ask you many questions and hope you can guide me. I will want copies of my tests, any reports and your assessment of me. How do we make this work?”

How important has it been to you to find other people with your condition who understand what you’re going through?

I had a unique situation in that I was essentially cured of my “incurable” Stage IV cancer. There was a time I felt guilty to talk about my successful treatment, feeling that it would be more hurtful for other patients who were not getting the kind of response that I had. I hesitated to offer advice and to share my knowledge, until someone explained that I had “survivor’s guilt.” That feeling had a name, but no initial direction. I knew I had to share the valuable information I could gather. My old schoolteacher/mothering instincts finally made me realize that I could provide a good example for others, and help guide them through the swamps they were in. That role as a “good example” suited me, and made it far easier to give not only information, but advice in a similar role.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

When I was newly diagnosed with breast cancer, which was my second cancer, I felt quite capable of dealing with the treatments to come. Then I met my new oncologist! Recommended through my Medicare Advantage group, I was surprised when his online bio did not mention anything about his skill in treating breast cancer. He noted that his area of specialist interest was in prostate and blood cancers, which did not fit my needs.

Nevertheless, I went to the first appointment. The biopsy report was in my purse, but wanted to hear his interpretation. That report clarified my type of breast cancer, the size of the tumors and location, all of which have a tremendous bearing on treatment. But first I asked about taking certain bone-strengthening agents in the presence of breast cancer, recommended in recent research. “Don’t even worry about such things. You won’t need it,” he said, this despite the existing guidelines. Moreover, he did not even discuss the pathology report, but recommended I see a certain surgeon, saying, “Go get your breast removed and come back to me, and then I will take care of you.”

More stunning than this statement was to learn that the surgeon was especially skilled in abdominal and vascular surgery. Closer to the breast than the prostate, I thought but still not close enough! He did not sound like the type of doctor who could do the best breast surgery on me, nor would he have the expertise to determine the level of surgery—lumpectomy, mastectomy or reconstruction.

The HMO had no particular experts in breast cancer, as “they all can do it,” as an explanation. I quickly shifted back to Medicare, and sought the expertise of a surgeon from a breast center in an academic center. My first appointment was thorough, the pathology discussed at length, as was the size and location of the tumors, which required a complete mastectomy. I understood that I was not a candidate for a lumpectomy, but was offered immediate reconstruction and to anticipate taking hormone inhibitors for the coming years.

In a short time, I had the necessary mastectomy and reconstruction, was set up with a physical therapist, and was comfortable enough to travel overseas just two weeks after surgery. I just don’t think that the prostate guy and the abdominal surgeon would have made that possible!

What makes you a valuable member of PatientsLikeMe when you are not dealing with the daily impact of either of your cancers?

I have asked myself what value I might bring to PatientsLikeMe, and to other patient-to-patient forums for several years. As I had discussed earlier, this role may be unique inside PatientsLikeMe, as most patients are dealing actively with treatment. My profile of how I feel is pretty boring, as I am happy and healthy 99% of the time. But my example might also be of value to other patients who confront serious diseases and find relief from the disease itself, yet never from the anxiety and impact of that illness. I might also be an example of more patients to come, who successfully conquer a cancer — for some time — only to have it return years later, or another take its place.

As cancer and other illnesses are becoming more like chronic illnesses than swift and savage killers, the affected patients and their families are changed forever. Never again will an odd bump or lingering cough pass unnoticed, nor will the fear that the cancer, in its drive to survive, will emerge again.

In addition, many of us are here because we did not get a good diagnosis early in the course of the disease, which may have cost us years of health or even a cure. Much of that should be attributed to the tenacity of diseases or our own cells missing a step at an inopportune time. However, a system which helps the patient work to get a diagnosis earlier, and one which teaches him how to engage his doctor in better care is possible, and the most effective way to benefit all of us.

Thus, my emphasis in PatientsLikeMe will continue to be an example of how one must learn to be engaged with one’s own health, knowing that this will vary from patient to patient, and from event to event. Engagement is a dynamic process, but is empowering, which alone can have a healing effect on the patient. I would hope other patients would recognize the value of their input into the research questions, that they support clinical trials, and work to create partnerships with all their healthcare providers.

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A Q&A with Mara Gaudette, MS, CGC, Teratogen Information Specialist, MotherToBaby

Posted February 8th, 2016 by

MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists (OTIS), is dedicated to providing evidence-based information to mothers, healthcare professionals and the general public about medications and other exposures during pregnancy and while breastfeeding.

Check out our Q&A with Mara Gaudette, a certified genetic counselor with MotherToBaby in California. Mara also counsels women who participate in the MotherToBaby Pregnancy Studies.

Can you tell us more about MotherToBaby? What is your role at the organization?

MotherToBaby is dedicated to providing up-to-date evidence based information on exposures during pregnancy and breastfeeding. Common questions that we receive from women, their families, and health care providers are about over-the-counter or prescription medicines, vitamins and herbal products, alcohol and drugs, vaccines, infections, chemicals, and health conditions that a parent has. Our service is free and confidential. We offer a range of contact options, including phone, email, online chat, and text messaging.

In addition to providing information, MotherToBaby also studies the effects of certain medications and diseases in pregnancy. Our studies involve phone interviews; there are no needles, no medications, and no changes to your normal routine required. These studies add to the knowledge base of the effects of medicines and health conditions during pregnancy, so we can help future moms and babies..

The counselors at MotherToBaby all have specialized training but come from a variety of medical and research backgrounds including genetic counselors, nurses, pharmacists, and doctors. My main role is to respond to questions that we receive by email and online chat; I’ll research the exposure that a person is asking about, and then summarize what is known about the effects of that exposure. This information helps women and health care providers make more informed decisions to ensure a healthy pregnancy and a healthy baby.

How does MotherToBaby help pregnant women living with chronic health conditions?

MotherToBaby helps pregnant women by giving them access to the latest medical data on how their health condition and the medicines used to treat them may or may not affect their pregnancy or their breastfeeding infant. It is not uncommon for women to get lots of advice from their friends and family, the internet, and even strangers, but this advice may not be accurate. We want women to have access to accurate and unbiased information so they can make the best decision for their health and for their baby.

Can you tell us more about the MotherToBaby Pregnancy Studies? What studies is MotherToBaby currently conducting?

We have a variety of studies but one of our main goals is to better understand how autoimmune conditions and the medicines used to treat them affect pregnancy. The autoimmune conditions we are looking at include ankylosing spondylitis, inflammatory bowel disease (Crohn’s Disease and ulcerative colitis), multiple sclerosis, psoriasis, psoriatic arthritis, and rheumatoid arthritis.

Our studies never require a mother-to-be to take a medicine or do anything different from her normal routine. Expectant moms are asked to complete 1-3 phone interviews during pregnancy and at least one phone interview after delivery, and we also ask women to release copies of medical records related to the pregnancy. Most of our studies also involve a free, in-home specialized baby exam by a world-renowned pediatrician.

We follow women who have autoimmune conditions and are taking a specific medicine, women who have the same health condition but are not taking the medicine, and women who neither have the health condition nor are taking the medicine. This better helps us understand both the effects of the medicine itself as well as any effects of the underlying health condition on pregnancy.

From the perspective of a certified genetic counselor, do you have any success stories you’d like to share?

It is not uncommon for both expecting and established parents to worry about their children (even when their babies are in their 30s!). My most rewarding contacts have been when I am able to provide reassuring information during a stressful time. Sometimes misplaced anxiety is due to patients and their doctors relying on the FDA letter category system alone to make a risk assessment (check out our blog on this topic:  http://mothertobaby.org/baby-blog/fda-pregnancy-risk-categories-going-away-for-good/). Other times, undue anxiety is from questionable internet sources of information or from the media highlighting the findings of a single research study instead of looking at all of the available data from all published studies (for example, see our response to recent media coverage of antidepressants in pregnancy: http://mothertobaby.org/news-press/mothertobaby-weighs-antidepressant-pregnancy/). There can be so much misinformation out there. It’s incredibly satisfying and rewarding to put an anxious parent’s mind at ease by providing accurate information!

What advice would you give to women who are pregnant – or trying to get pregnant – but are also living with a chronic health condition?

If you are trying to get pregnant (or just learned you are pregnant), then meeting with your health care providers (both your obstetrician as well as the specialist treating your health condition) is especially important to review your symptoms and the medications you’re taking. Many untreated maternal health conditions (like asthma, diabetes, epilepsy, depression, and inflammatory bowel disease) pose risks to the pregnancy, so never stop or change any medicines without first talking to your doctors.

For anyone trying to get pregnant, taking 400 mcg of folic acid every day is recommended to reduce the chance for specific types of birth defects of the head/spine. It is also recommended that you avoid alcohol, cigarettes, or other recreational drugs. The Centers for Disease Control and Prevention (CDC) has a detailed pregnancy planning checklist to fill out and review with your doctors; you can find this checklist at http://www.cdc.gov/preconception/showyourlove/documents/healthier_baby_me_plan.pdf

We’re so happy to be a partner of MotherToBaby. How do you think MotherToBaby members can benefit from PatientsLikeMe? How can pregnant PatientsLikeMe members living with a chronic condition benefit from MotherToBaby?

We’re very excited about the partnership too! Because many of our MotherToBaby moms and moms-to-be are living with chronic health conditions, PatientsLikeMe would be a wonderful forum for them to share their own experiences and to learn from the experiences of others who have “walked the walk” of a chronic disease. Information sharing and getting support from others is so critical when you’re living with a chronic health condition!

It’s our hope that PatientsLikeMe members who are pregnant, planning a pregnancy, or nursing will find our services helpful in navigating decisions about treatments during pregnancy and breastfeeding. We also hope that those who are pregnant will be willing to share their experience with our MotherToBaby Pregnancy Studies, helping us find better answers for future moms and babies. As the saying goes, “information is power” – but we feel that contributing to that information in order to help future pregnancies is especially empowering for women!

Click here to learn more about MotherToBaby.

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We can. I can. Start talking about cancer.

Posted February 4th, 2016 by

Every February 4, all corners of the world unite in the fight against cancer on World Cancer Day (WCD). What’s the purpose? To get as many people around the globe talking about a disease that continues to claim 8.2 million lives every year.[1]

How can you get involved?

Every action counts and the more people out there making noise – the better. Enough awareness and education urges people to take action and can save lives.

This year marks the start of a three-year campaign for reach and impact under the tagline, “We can. I can.” You can start talking by sharing one of the ready-made tweets on their site, add your WCD activity on the map of impact, support WCD’s “Talking Hands” on social media, join the WCDThunderclap campaign, download sharable materials and more.

And don’t forget to share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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