749 posts in the category “Conditions”

“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Posted May 24th, 2017 by

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now.

Early days with PD and finding PatientsLikeMe

Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online.

“Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.

 

“I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”

 

Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key.

“PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says.

Using PatientsLikeMe through the years

Early on, Gloria turned to the website for members’ drug evaluations (noting some frustration over the delay in being able to track Rytary XR – but that is possible now). Over time, she has used the site for tracking her own condition and helping others who’ve joined the community.

“I often look back at the historical data – sometimes it’s frustrating, other times encouraging,” she says. “I mostly look at my own data but if I’m trying to answer another poster’s question, I might look at their data to see what else might be happening with them.”

She has used her data to help people offline, too, including at her support groups. The wife of a local retired dentist with PD needed more information about the condition.

“So I gathered literature from my file and brought it up to her yesterday,” Gloria says. “This just shows that people from all backgrounds need education and support.”

Meanwhile, Gloria has continued to make strong friendships through the forums.

 

“The regular posters come to feel like family.”

 

Gloria says she has met up with fellow PatientsLikeMe members at the World Parkinson Congress in Montreal (2013) and Portland, Oregon (2016).

What’s she up to these days?

“It’s been over 10 years that I’ve had Parkinson’s,” Gloria says. “Looking back, I’ve been lucky that the progression has been slow.”

Gloria and her husband recently retired but continue to do some consulting work. They divide their time between their home in upstate New York, a winter home in Florida and a family retreat in the Catskill Mountains. She travels, exercises, maintains a personal blog, and even exhibits her work in art shows (top photo).

“My mantra is ‘use it or lose it,’” she says. In addition to encouraging others with PD to exercise and stay active, she also recommends: using a movement specialist, keeping legal documents (will, power of attorney, and healthcare proxy) in order, and educating adult children about the condition and its possible long-term progression.

Gloria fears her condition will get worse and her grandkids could be afraid of her PD (because she witnessed this with an aunt who had ALS), but she remains hopeful.

What brings her the most joy? “Spending time with friends and family, and watching my 2-year-old granddaughter learn – and hoping that there will be more grandchildren to come in the next few years.”

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

Posted May 19th, 2017 by

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety.

“I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms.

“It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family.

My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety.

In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife.

When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I had to have a depression/anxiety medication. While Topamax increased my anxiety, it also helped to lower my seizures and helped me regain my ability to think. Seizures were robbing my ability for complex thought. I still take Trokendi XR, a form of Topamax. Everyone’s response to these medications is unique, so talk with your doctor about how they affect you, especially if you have suicidal thoughts.

As a mom, I was unable to see how much my depression was impacting my parenting until I was on medication (Cymbalta) and started feeling less anxiety and depression. One month later I was traveling alone and I suddenly realized that I felt zero anxiety on the plane, elevator or city taxi – I felt freedom for the first time, ever!

“I realized my spouse and kids had a less than effective mother than they could have had during some of those years. I do not dwell on this since I cannot turn back the clock. I use this to tell other parents: I did the best that I could during those years – part of the time I did not even realize that I had depression and anxiety.”

Doctors and specialists were reluctant to diagnose me with depression. I was even placed on a depression medication at one time “to help with the migraines.” I was concerned because I did not want to be thought of as “crazy.” If my doctor had been more honest and said she felt I was depressed and I should try this medication, it would have been wiser. A doctor who can say, “sometimes depression also causes physical symptoms” – true fact – helps the patient to understand this and make informed health care decisions. 

“Being a mom when you have many physical and emotional issues is very challenging. I often put my children’s needs first. I got to the point when I knew I had to take care of my needs.”

When I did this, I knew I was doing the best for all of us. I could not take care of them if I was too depressed, too anxious or in too much physical pain. I teach this to other parents, at well.

My son’s anxiety was noticeable even at age 3. He was diagnosed with it formally at age 11, but not placed on medications for depression and anxiety until after his first two suicide attempts at age 15.

Sam’s mental health issues seemed intermingled with his epilepsy. They can be bi-directional, meaning they can occur before or after one another, according to Dr. Andres Kanner, who has studied how they’re related. Depression is the psychiatric disorder that occurs most frequently with epilepsy (affecting 20 to 50% of people with epilepsy, depending on epilepsy type). Learn more here. The suicide risk in people with epilepsy is more complicated. If you or someone you know expresses suicidal thoughts, please seek help through crisis resources like these.

Sam’s health issues taught me that we are so much more than a list of conditions. He taught me how to deal with – as well as how to advocate for – a person trying to cope with these life-and-death conditions. I learned how to speak to him and the importance of including people – a child, teen or adult – in decisions about their care.

I became an advocate at the national and state level so that our representatives could begin to understand what patients and families endure.

I found a program through the Epilepsy Foundation and asked if he wanted to apply to go to Washington D.C. to talk to senators and congressmen. He got in and we went. That began our lifetime odyssey.

People around the world learned about Sam’s life and death because others went on telling his story through the Epilepsy Foundation and the websites we went on. People had watched him grow from a little boy to a 20-year-old man. At 16, Sam used his artwork to help others with depression to find hope and help by creating Preventing Teen Tragedy.

I cope with my grief through continuing to help others. I had a non-profit for six years that worked with the Epilepsy Foundation. I was trained as a grief specialist. I use portions of Sam’s story with my clients at work as a Mobile Crisis family partner. I also talk to others online.

PatientsLikeMe has been a safe place for me to come and share, first while Sam was still alive. Now, having a safe place to come and read and talk has been such a great coping method for me. I cannot always share about my son fully in other places because people become uncomfortable. Sam died of suicide on his fourth attempt. 

“People forget that when a mother talks about her son, it is not about his death, it is about the fact that he lived. I have lost so many of my friends because they do not know what to say so they just stay away from me because they are not comfortable.”

Mental illness is not a weakness. Depression and anxiety are conditions of an organ in our body and should be treated as such. I can come to the website and know that others have answers to help me through the rough times. I do not need to weather this journey alone.

My tips for women and moms living with mental health conditions: 

  • Take care of yourself through a healthy diet. Depression may cause under- or over-eating. Do your best to work on changing how you eat.
  • Exercise, even when you don’t feel like doing it. I am 54 years old, work a 12.5-hour shift four days a week and do not feel like working out a lot of the time. I am adding in yoga, stretches, walking, and whatever else I can to keep moving. This helps all of my conditions.
  • Involve children in eating well and exercise. We used to kayak, play tag, walk and do what we could to stay active. When I felt moody around the kids I would tell them, “OK, it is time to walk the grump.” Before we would reach the end of the road, all of us would be in a better mood.

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How does ALS make you feel #InThreeWords?

Posted May 17th, 2017 by

May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords.

Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.

PatientsLikeMe co-founder Jamie Heywood

 

Jenna Tobey, Manager, Customer Strategy and Value

 

Kate Brigham, Director, Design

 

Margot Carlson Delogne, VP, Communications

And, check out 2016-2017 Team of Advisor member Cris’ three words:

What are ALS members saying in the forum? 

 

“Enraged, alone, afraid”

– Kzueger 

“Uninvolved, sorrowful, useless”

mbond0623

“Frustrated, compassionate, claustrophobic.”

jimig

“Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others”

bountiful

“Helpless, angry, pissed off.”

MsJLB

 

Let’s spread the word and end ALS together.

 

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“There were so many people asking the things that I was too afraid to ask”

Posted May 15th, 2017 by

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness.

A jarring diagnosis

“Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.”

The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help.

A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI.

“This all took place within a 48-hour period and I had my diagnosis immediately.”

 

Coming to terms with her new normal 

“To say I was stunned would be a gross understatement. My only prior knowledge of this illness had been of my maternal uncle and his hard-fought battle with MS, which he lost while bed-ridden to pneumonia 25 years earlier. I was terrified.”

Jackie, a mother of three children over 15, was grateful that she could rely on her family for support, but still worried about her future and the future of her family.  As an active woman who enjoyed downhill skiing, boating, working in the yard or just tending to her family business, she worried.

“What would this mean for me?  For us as a couple?  Would I be in a wheelchair soon or bedridden young as my uncle had been?  I was only 44 years old and my husband and I had so many plans…so much life ahead of us. What would life be like now?”

Treatment challenges

Following the advice of her neurologist, Jackie began having monthly IV infusions of steroids After 15 to 18 infusions, Jackie thinks that, though an infusion of steroids may help hasten the duration of a relapse, she came out of it with additional bone damage.

“My bones and teeth have been weakened to a point that I am best described as “Humpty-Dumpty” if I were to ever foolishly attempt to ski and fall or merely slip on the ice in my own driveway.”

Jackie began taking a disease modifying drug (DMD) called Rebif that caused flu-like symptoms that severely impacted her quality of life. One week after starting the drug, she experienced full anaphylaxis.  Jackie’s daughter found her unable to speak or breathe properly, requiring an emergency trip to the hospital.

She also tried Copaxone. Since she was still relapsing and paying out-of-pocket, (Jackie lost her insurance because she has a pre-existing condition) the price of $3,500 monthly just didn’t seem prudent.

Finding hope in the forum

“PatientsLikeMe is invaluable to me. I’ve learned everything of value about how to come to terms with (early on), live with and manage my illness through the people I have met here throughout the years. I’ve made some wonderful and lasting friendships and met many in person. I continue to communicate with several on a regular basis both on and off the forum.”

With an overwhelming diagnosis, difficult symptoms and frustrating treatment experiences, Jackie wanted to connect with others who were experiencing the same things.  For Jackie, finding PatientsLikeMe changed everything about her life and how she views herself and her illness.

“There were so many people asking the things that I was too afraid to ask and the number of replies were staggering. I felt like I had finally found a place that I could really belong.”

Jackie found more than social support in the forum. After seeing a photo of a strange red line moving from Jackie’s foot to her calf, and thinking it might be MRSA, lady_express_44 (whom Jackie considers to be the guru of all things medical) encouraged her to go to the hospital immediately. It was MRSA and Jackie’s doctors told her she could have lost her lower leg.

Taking back control

 Being diagnosed with a chronic and progressive illness is perhaps one of the most daunting things that can happen to a person. It’s frightening and for good reason. Jackie’s advice?

“Don’t waste time worrying about things unknown and make your best effort to live for today. Take charge of your illness and make the very best possible decisions for your health. We must advocate for ourselves and our future.”

Jackie also advocates for connecting for connecting with others, especially on a web site such as PatientsLikeMe where there are so many wonderful and knowledgeable people to share their experience and expertise.

“It has made a monumental difference in my life and I believe, the course of my illness. I don’t view my MS as an end to anything but rather as something I simply have and something I’m managing to live with. It truly isn’t who I am, but rather just one more aspect of my being.”

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Let’s make fibromyalgia visible today

Posted May 12th, 2017 by

Fibromyalgia awareness day

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.”

-PatientsLikeMe member living with fibromyalgia

“I am so tired of the ‘but you don’t look sick’ comments.”

-PatientsLikeMe member with fibromyalgia

“I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.”

-PatientsLikeMe member with fibromyalgia

This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women.

Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with fibromyalgia, wrote an open letter to the “normals” describing what it’s like to live with a chronic pain condition while dispelling myths that often surround it.

Letter to the normals

 “We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as ‘flaky’ especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice”.

 

Check out Craig’s full open letter to the normals here.

 

So, how can someone with fibromyalgia improve their quality of life? According to the Centers for Disease Control and Prevention (CDC), there are a few things that people living with fibromyalgia can do – namely, exercise.

  • Get active – The CDC suggests physical activity can help improve symptoms of fibromyalgia, including pain, sleep problems and fatigue. It can also reduce the risk of developing other chronic diseases like heart disease and diabetes. However, physical activity can be extremely challenging for those living with chronic pain, so the CDC advises to start slowly and gradually increase your activity level. It can be as small as doing some stretches in bed each morning. They also have a list of recommended exercise programs which you can read more about here.
  • Self-management education – learning more about your condition can help you gain better control over managing your symptoms. Joining sites like PatientsLikeMe to learn about yourself and others like you can help you better understand life with you condition. The CDC also has a list of recommended self-management education programs.

There are more than 3,000 topics in the fibromyalgia forum tagged with “exercise”. Join the discussion!

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What’s in my bag? Motherhood with a health condition = “Mary Poppins” purse

Posted May 11th, 2017 by

Happy (almost) Mother’s Day! I’m Erin, a PatientsLikeMe senior copywriter living with type 1 diabetes – and a very busy toddler. My sister recently joked that my purse is “quite the Mary Poppins bag.” And it is. Between my diabetes “jazz” and baby paraphernalia, I need a big bag. The spread of stuff I lug around is far from those sleekly styled “What’s in my bag?” features you see in tabloids, where celebrities flaunt their favorite eyeliner, seaweed snack and fur keychain.

So what’s in my bag? This is just a sampling of things I bring when I’m running quick errands with my daughter (longer trips call for larger and/or multiple bags).

Diabetic Mom

Diabetes stuff

  • Glucose meter and all the fixin’s: needles for finger sticks, test strips, alcohol wipes to use when I can’t wash my hands before testing
  • Insulin, Humalog (insulin lispro), and needles for injecting it
  • An empty medication bottle, which works well as a mini, childproof “sharps” container
  • Snacks! I try to pack a few kinds – like popcorn, whole-wheat crackers, protein bars and string cheese – for a mix of carbs and protein. Manufactured foods have been demonized lately with the (positive) trends toward “clean eating” and whole foods. But my doctor assured me that the healthy packaged snacks are great for people like me who are always on the go and need to check nutrition labels and count carbs (to balance with insulin intake). Also, I always have water on me because diabetes can make me super thirsty.
  • People taking insulin always need to have candy or something purely sweet on hand in case of low blood sugar. I keep glucose tablets at my house and in my car, but Smarties are a nice, compact treat to keep in the pocket of my glucose meter case.

Being diabetic and a mom

Mom stuff

Diapers, baby wipes, spare clothes, a sippy cup, snacks, books and a toy (usually a doll – because babies love babies) are the “momming” basics in my bag. Car keys make a great teether when molars are coming – fun! Oh, and a lone shoe: One little shoe always ends up in the mix because my daughter is happiest when she’s wearing just one.

Motherhood with diabetes

What have I learned about managing all this stuff (in my bag/life)?

  • Pouches win. I store my diabetes things in a zippered pouch to limit some of my rifling when I need to dig it out. A cute pouch can bring a little bit of joy when you’re toting meds for a chronic condition.
  • I’ll always forget something. I’ve forgotten my umbrella on rainy days, my wallet for grocery trips, and diapers or wipes during, uh… inopportune times. I failed to grab my insulin for my birthday lunch last month, so I rolled with it and ordered chicken Caesar salad and a sugar-free mojito. [Confession: I was pretty mad.]
  • Planning ahead – not my strong suit – pays off. I didn’t get the “checklist-y” gene most of my relatives inherited. I’m more of an on-the-fly packer, but that just doesn’t work well as a mom with diabetes. During the week, I pack my work bag and my daughter’s daycare backpack the night before. [Confession: Not always true.]
  • Cliché but… don’t sweat the small stuff. Until recently, we sent my daughter to daycare in her footie PJs because we were juggling so much in the morning – nobody judged/we didn’t care. My “beauty routine” is roll-on under-eye concealer and maybe some blush, on a fancy day. No biggie.
  • “Adulting” is hard. Sunglasses are great for both sunny days and the occasional tough day when I need take a walk and shed a few tears – which is so healthy. My (amazing) mom died when I was in college, and balancing motherhood and diabetes isn’t easy, especially without her in my life. Big props to my husband – who is incredibly helpful, patient and supportive – and to my daughter, who makes life sweet.

Keep on hustling, moms! You’re awesome – even if your bag is a big ol’ mess.

On PatientsLikeMe, more than 12,000 members living with health conditions say they’re interested in connecting about parenting. And hundreds of topics in the forums are tagged with “parenting.” Join the discussion!

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Meeting PF patients where they are

Posted May 8th, 2017 by

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.

“I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.”

John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community.

Life after transplant

John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle.

“The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and attend medical conferences. I can help others by sharing my experiences and the knowledge I’ve gained. I have also learned to cherish the moments that make living wonderful.  A moment of kindness, shared empathy or even a smile mean so much to me now. The rest doesn’t really matter. Life is good.”

Fighting isolation with the help of Facebook

According to John, many people diagnosed with IPF have never even heard of the disease prior to hearing of it from their doctor. Then they learn that their disease has no cure and only a couple of treatments that slow the progress of fibrosis for some. Online research about IPF offers little comfort either. John’s experience motivated him to start an online support group using Facebook Live.

 

“IPF can be a very isolating disease. Your friends and family have never heard of it and you are reminded of your mortality with every breath. In my case, each trip to the pulmonologist was just proof that my disease was progressing. A support group can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

 

After trying a paid platform to share their meetings, but finding it too difficult for some participants to access, John thought Facebook Live seemed a good option. Once someone has joined the group they get a notification when the support group goes live.

“They are then just one click away from being able to join the meeting and participate with folks who share the same journey.”

Though the Facebook group is new and participation is growing, John hopes that it will help people understand that they are not alone, and that he can provide some valuable information about IPF and lung transplants.

Managing with PatientsLikeMe

“I use PatientsLikeMe to track my data and as a platform to share with others in our community. I can easily view my lung function both before and after my transplant, track my weight loss and ensure I am maintaining a healthy weight, and keep an eye on A1C, cholesterol, and all my medications in one place. PatientsLikeMe has also given me the opportunity to participate in studies and share my voice with the healthcare community.
 

“The pulmonary fibrosis community on PatientsLikeMe was my anchor when I was coming to terms with my IPF diagnosis, and continues support now that I’ve had a transplant.”

 

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Arthritis by the numbers: 50 million+ Americans live with it

Posted May 5th, 2017 by

May is National Arthritis Awareness Month. How many people are living with this condition? 53 million Americans and counting. Various forms of arthritis – including osteoarthritis, rheumatoid arthritis, gout, lupus and fibromyalgia – are all on the rise, according to the CDC.

arthritis awareness month

Let’s look at some other facts and stats about arthritis, courtesy of the Arthritis Foundation:

  • 67 million – the estimated number of Americans who’ll be living with arthritis by 2030
  • 300,000 – the number of babies, kids and teens living with arthritis or a rheumatic condition today
  • Nearly 1 million – the number of hospitalizations each year due to arthritis
  • 172 million – the combined number of work days people with osteoarthritis and rheumatoid arthritis miss every year
  • $156 billion – the annual cost of arthritis in terms of lost wages and medical expenses
  • # 1 – arthritis is the nation’s top cause of disability

arthritis awareness month

Arthritis experts are also concerned that more than half of people with arthritis are also living with heart disease or diabetes, and they typically have worse outcomes because of activity limitations.

Who’s tracking arthritis and related conditions on PatientsLikeMe?

 

Connect with people living with these conditions in the Muscle, Bones and Joints Forum and the Immune, Inflammatory and Infections Forum.

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It’s Melanoma Awareness Month, let’s talk famous faces who’ve battled melanoma

Posted May 4th, 2017 by

Do you know anybody who has or had melanoma? If you answered yes, you’re among many others – melanoma is one of the most common cancers diagnosed in the United States. Rates of the skin cancer are increasing rapidly, particularly among younger people and in fact, cases of melanoma just in the last 30 years alone have tripled.

To encourage more awareness of this serious disease, a number of celebrities have publicly shared their battles with skin cancer, here are just a few…

 

Jimmy Carter

The former president announced he was battling melanoma in 2015. Thankfully he made a full recovery after treatment with Keytruda (Pembrolizumab), an immunotherapy drug.

 

 

Maureen Regan

The daughter of former president Ronald Regan sadly passed away in 2001 after a five year battle Melanoma.

 

 

 

Troy Aikman

This football legend had spotted a suspicious mole on his shoulder that turned out to be melanoma. He later had an operation to remove the melanoma and is now doing fine.

 

 

 

Eva Cassidy

The singer was only in her thirties when she had a malignant mole removed from her back. Three years later, the melanoma returned and she sadly passed away from the disease.

 

Know the signs

One of the most important elements of melanoma treatment is early detection. The Melanoma Research Alliance put together a brief alphabetized checklist to keep in mind to help identify early warning signs:

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“Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey

Posted May 2nd, 2017 by

Keytruda for lung cancer

We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years later Gloria still lives by her motto: “Never give up, never give in.”

Gloria was recently accepted for treatment with Keytruda, a groundbreaking new immunotherapy drug. Read on to find out more about how treatment with Keytruda is going, what she’s been up to since we last spoke to her and what she’s looking forward to.

What have you been doing over the past two years, since we last spoke?

From October 2013 to October 2015, I was stable, until a scan revealed that the primary site, right lung, had increased from 3mm to 16 mm, and I had a new growth in the liver. Because it had been so long since my last chemo, Dr. Brown, my oncologist, was able to offer further chemo, this time Carboplatin and Pemetrexed, four treatments every three weeks. My prognosis was 6 to 9 months without treatment, up to 18 months with, assuming it was successful. I didn’t expect to be offered another chance at chemo, so I didn’t have to think twice before accepting. Unfortunately, the first infusion made me extremely ill, and I was unable to continue. I opted to go back on watch and wait for three months, and recommenced treatment in March 2016.
The next few months were very rough, but made bearable by keeping a syringe driver on throughout. This caused a very nasty case of cellulitis by the fourth treatment, which eventually had to be treated in hospital with intravenous antibiotics. I got through this stage by telling myself that however horrible I felt, in a few days it would pass. Which, of course, it did, and I was able to go on the next treatment. I was pretty much housebound during this period, and promised myself that if the chemo was successful I would look into leaving my 5th floor flat and apply for a ground floor flat near to where my sister lives. The following scan revealed that all tumours showed considerable shrinkage, and no new growths, another miracle! I cannot describe the relief and gratitude I felt at this time. I applied for, and got, a garden flat on a lovely estate a few doors away from my sister, and fully warden controlled. I moved in October and have blessed every day since, I’m so much happier here, I’m not isolated and lonely, I’ve got a front door and a garden and I’m in the countryside. It’s perfect, and I see my lovely sister most days, she’s easier in her mind too, having me nearby. I did it just in time too because the next scan in November showed that the cancer was growing again, and because it had recurred so quickly it was probably now resistant to further chemo. I thought this was the start of the home run, which I knew had to come eventually, and was prepared for. But fate hadn’t finished with me yet, it was this very week that the new immunotherapy treatment, Pembrolizumab, was cleared for suitable patients in the U.K.

Dr. Brown said he was happy to put me forward for it. There followed an anxious wait until January while my biopsy sample was tested in Birmingham to see if I was suitable. And it was! It’s easy for me to believe that my darling husband, Tim, is up there rooting for me, having a word in the big man’s ear, as he would put it.

You mentioned you’ve been accepted for treatment with Keytruda, can you explain what the treatment is and what it means for you? How is treatment going so far?

Keytruda is one of the new immunotherapy drugs, and it’s a massive breakthrough. As far as I understand, it’s offered to lung cancer patients whose cancers have stopped responding to chemotherapy. It can only be given if a certain protein shows in the biopsy sample, which fortunately mine did. I was one of the first in the country, and the first in my local Trust, to be given it so I feel incredibly privileged. It’s given by infusion in the chemo unit, it takes about 30 minutes with a 10-minute flush afterwards. Generally, after 4 infusions a scan is done and if the treatment appears to have been effective it can continue every three weeks for as long as it’s effective, for up to two years. I take this to mean that two years is the maximum survival rate. It’s not a cure, but it’s giving extra time to people whose time was running out, and there are very few side effects so that time can be enjoyed without the misery that comes with chemo.

I had my first infusion on January 17th, and felt well for the first week, then came down with a severe chest infection. This responded well to antibiotics and my doctor, Dr. Brown, doesn’t think it’s treatment related. My two following infusions have gone well, with no side effects, I feel well but am very easily fatigued, much more than usual. The best thing is not having to take a vast cocktail of post treatment drugs so my head is clear and I’m not walking around like a zombie!

My fourth treatment is March 22nd, with a scan booked for 18th April, at which point I should know if it’s working.

The X Ray that I had before my last treatment showed a distinct improvement in the area of the primary tumor, but Dr. Brown has said he can’t be sure that it isn’t the effect of the antibiotics on the chest infection, but it looks promising, nothing new growing in there at least. So, we wait and see.
What does Keytruda mean to me? It’s exciting to be involved in such groundbreaking treatment, and even if it doesn’t work for me, to know that everything they learn from my case will help in the further research and development of immunotherapy. Who knows where this will take the treatment of all cancers, even eventually to a possible cure? Also of course, it means hopefully more time. My daughter is getting married to her lovely man in October, and I want to be there. I’ve bought my outfit, and I’m determined to show it off!
In the meantime, every morning that I wake up feeling well is a day to celebrate life. And I saw another Spring!

Gloria’s spring garden

How can others grappling with a difficult diagnosis apply your motto: “never give up never give in,” to their own life?

In all honesty, I’m not sure they can. Every cancer, every patient, is different, and we all deal with it in our own way, finding courage and inspiration from wherever we can. However, I will repeat what I said in my last interview, which was: “somehow, from somewhere, courage will come.” When we are first given a terminal diagnosis, it seems insurmountable, how will we ever be able to cope? But for the most part we do, because we have to, and courage comes to help us through, and to help our families through, and we live a “new normal” life as time passes. I’m very aware that I’ve been incredibly lucky, and I’ve had a long time to adjust to my new normal.

I’m a realist, as well as an optimist, and I know my time will come, as it does to everyone, and I hope I can carry “never give up, never give in” with me to the end. For me, then, it will mean accepting the inevitable with as much grace and courage as I can drum up.

How has PatientsLikeMe helped you through the challenges of the last few years?

One of the most significant ways in which PatientsLikeMe has helped me, is to show me how very lucky I’ve been. Reading some of the posts, and seeing for myself the age and circumstances of other cancer patients has really made me thank my lucky stars. Yet I see that people much worse off than me are coping, and getting on with their lives, just as I am. So if they can, I surely can.

We’re stronger together, so to be in touch with other patients is really empowering. If I’m having a bad day, I can be honest here, and say so. Just one message of support in reply is enough to remind me I’m not alone, and of course that works both ways. I have the good fortune to be a recipient of the very best care the NHS has to offer, all completely free. I couldn’t have had better care, and in many other countries I would have died long ago. The NHS is far from perfect, but it’s still wonderful, and I cannot thank or praise my medical team highly enough. Sometimes, reading of the struggle some patients from other countries have, just to fund their treatment, leaves me speechless.

In conclusion, can I send a message of hope and support to everyone currently engaged in the fight against this evil disease, and their families. Huge advances are being made, let’s hope that future generations can be free of the scourge that has affected so many, for so long.

Never give up!

Have you ever experienced Keytruda (Pembrolizumab) therapy to treat your condition? Share your story in the comments.

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“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Posted April 28th, 2017 by

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development.

Parkinson's Disease patient

Lisa Cone, PatientsLikeMe member living with PD

Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along with Maria Lowe, Pharm.D. – a health data and drug information clinical specialist at PatientsLikeMe – and other pharmacists and Ph.D.s.

“I hold my co-authors in the highest regard,” Lisa says. “That said, not one of them was a person with an incurable, progressive neurodegenerative disease. My expertise is as a person with Parkinson’s.”

 

Maria says that having a patient co-author was “crucial” to the publication. “We wanted to look at how drug developers were incorporating patients into drug development activities and recommend some best practices,” Maria says. “How could we possibly do this without ensuring we were representing what matters to patients?”

The value of partnering with patients

In addition to teaming up on the research paper, Lisa and Maria also both participated in a webcast on April 12 on PDUFA VI and the Patient Voice.

PDUFA stands for the Prescription Drug User Fee Act, which the U.S. first enacted in 1992 to allow the FDA to collect fees from pharmaceutical companies to help fund the FDA’s drug review and safety monitoring processes. PDUFA VI, the pending update to the legislation (up for renewal in September 2017), would require drug developers to include more of the patient perspective in the early stages and overall process of drug development. (Read more about it here.)

Maria Lowe

Maria Lowe, Pharm.D., health data and drug information clinical specialist at PatientsLikeMe

Lisa says that the FDA has been trying to drive a higher level of patient participation in the trial process and the drug approval process. New leadership and budget changes in Washington could shift or delay the FDA’s focus on patient-centeredness, but Lisa still has a message for pharmaceutical industry leaders:

“I urge you not to confuse the value of partnering with patients with the requirement to partner with patients.”

 

But she adds that low participation in trials often stems from problems in the study design from the get-go. Involving patients early and often in trial design and drug development can pay off big time, Lisa says. “The time and resources it takes to bring a single new therapy to market are significant,” she says. “Because of this investment, failure to assess the needs of patients early in the development process can mean marginal success or frankly disastrous results when taken to market.”

On becoming a patient thought leader, plus a few pointers

Lisa had professional experience in the healthcare field — before leaving the workforce, she was an executive responsible for understanding the business of and policies affecting healthcare providers.

“I do not, however, believe that these experiences are required to be an effective advocate. I believe having knowledge of your condition beyond your personal experience is the primary requirement, which is not complicated,” she says.

On PatientsLikeMe, 23,512 patients say they’re interested in advocacy. Lisa’s advice? Find a “role that most suits your gifts,” such as fundraising, lobbying or speaking. She also puts her her physical and emotional health first. “This means taking time to relax, play with my dog, visit with friends and family and getting physical activity,” she says. “I’m not always successful in this endeavor as I have a tendency to ‘over volunteer.’”

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Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)

Posted April 26th, 2017 by

It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to a broader audience online in a cool new blog (psst – Rolling Stones fans, read on…)!

Pamela Quinn Parkinson's

Some members have noted in the PatientsLikeMe PD forum that they’ve attended and benefited from dance classes for people with PD (even ones that reference Pam’s teachings!). But what if you have PD and live where classes like this aren’t available – or if dance classes just aren’t up your alley? Check out Pam’s blog, PD Movement Lab.

Songs to step to

Pam uses visuals, like photos and videos, in a series of mini-lessons for moving and walking with PD. In one of her first posts, she shows how walking to music can make a big difference, and offers a playlist of her favorite songs to walk to at varying tempos, including:

  • “Fever,” Peggy Lee (68 beats per minute)
  • “Clarinet Concerto in A Major,” Mozart (94 bpm)
  • “Moon Rocks,” Talking Heads (124 bpm)
  • “Brown Sugar,” Rolling Stones (129 bpm)

(Hint: You can find out the tempo of your own favorite songs using this neat BPM calculator, and then create your own playlist.)

“We can put it back together”

Pam’s blog is all about empowering people with PD to keep moving, although she knows first-hand that it’s not easy (she has lived with PD for more than 20 years).

Dancing for Parkinson's

“Why are we breaking a walk down into all these bits and pieces?” she says in her latest blog post (about arm swing – featuring Judy Garland). “It’s because with Parkinson’s, we lose the ability to move unconsciously. But if we understand how things work, we can put it back together. It may require a conscious effort but at least we have the opportunity to move with coordination, fluidity, skill and awareness.”

Do you have any tips for moving or walking with PD, or favorite songs that keep you moving? Make a comment below!

On PatientsLikeMe, dozens of patients have reported trying various forms of dance to help manage their condition. Take a look.

A note from Pam: The content of this post is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

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April is Sjogren’s Awareness Month

Posted April 21st, 2017 by

It’s April, which means it’s also Sjogren’s Awareness Month. Why do we need awareness? Around four million Americans have Sjogren’s, but less than half of those patients are diagnosed. Sjogren’s is often referred to as an invisible disease and despite patients’ severe discomfort, many don’t often see it as debilitating. This can be isolating for patients and one of the many reasons more awareness of this condition is needed. So, let’s talk facts.

Sjogren's syndrome statistics

Image courtesy of the Sjogren’s Syndrome Foundation

Sjogren’s is an autoimmune disease which affects the entire body, the vast majority of cases are seen in women (around 96%). The symptoms of the condition are scattered and, in many cases, not connected which means misdiagnosis or delayed diagnosis is very common. Take a look at some of the Symptoms of Sjogren’s.

Sjogren's syndrome symptoms

Image courtesy of the Sjogren’s Syndrome Foundation

What can you do to help spread awareness? Share your experience with Sjogren’s on social media with the tag #ThisIsSjögrens, and join the conversation on PatientsLikeMe to learn how others are managing their symptoms.

Meet others with Sjogren's Sydnrome

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Member voices: I have IBS, here’s what I do…

Posted April 18th, 2017 by

If you’re living with irritable bowel syndrome (IBS) you’re not alone. In fact, IBS affects up to 1 in 7 Americans, so chances are you may know someone who is going through the same thing. Despite it being so common, many people living with IBS are unaware that their symptoms indicate a medically recognized disorder, which is why April has been named IBS Awareness Month, to increase recognition for this common condition.

In the PatientsLikeMe forum, members are talking about how IBS affects them and sharing how they manage their symptoms. Take a look at some of what they had to say…

Coping is hard because you have to rigidly stick to a bland diet which causes constipation, so I take a half dose of Miralax daily.

-PatientsLikeMe Member

I follow a bland diet most of the time. I like raw fruits and vegetables and cereal. Pasta with butter and Parmesan cheese is always a good choice. I NEVER eat spicy food and I stay away from raw onions. 

-PatientsLikeMe Member

Miralax works wonders for me. I take it every day and this keeps me regular.

-PatientsLikeMe Member

I personally don’t take any meds. I watch my diet very carefully. I do try to stay away from spicy food and corn. I don’t go completely without corn however I know if eaten it will cause a lot of issues. I also bounce between having the diarrhea and constipation. It is a very frustrating vicious cycle.

-PatientsLikeMe Member

The best thing that I have ever done for my IBS was high-dosage Xifaxan. I convinced my doctor to prescribe me this after reading a book entitled A New IBS Solution.

-PatientsLikeMe Member

I took Librax for years, until I discovered Bentyl (which they gave my mother IV in the ER when she had an emergency attack of IBS). It comes in pill form, too, and IT WORKS. It almost completely controlled my IBS issues.

-PatientsLikeMe Member

There are lots of different ways to manage IBS, from prescriptions to dietary changes and more. Did you know there are currently more than 5000 members on PatientsLikeMe living with IBS? They’re talking about their symptoms, finding support from others in the forums, sharing the treatments they’ve tried and tracking how those treatments are impacting them. Join the conversation on PatientsLikeMe.

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