7 posts from September, 2016

Cancer Awareness in September: prostate, thyroid and ovarian

Posted September 29th, 2016 by

September is all about education — and not just because it’s back to school month. It’s also the official awareness month for three different types of cancer: prostate, thyroid and ovarian. Here’s a snapshot of what national organizations have done to spread more understanding…

 

Prostate cancer: #StepUp, get checked

The Prostate Cancer Foundation (PCF) has launched a #StepUp campaign to empower men to take control of their health and encourage their families to support them. It’s also about early detection — have you or men in your life been screened for prostate cancer? Get checked, and learn more in these helpful guides including questions to discuss with your doctor.

 

Thyroid cancer: Get a neck check

With tips, awareness tools, graphics and more, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.

 

Ovarian cancer: See the signs, #KnowOvarian

Do you know the common signs of ovarian cancer? It can be difficult to detect, so the National Ovarian Cancer Coalition has been using the hashtag #KnowOvarian this month to gain more attention for this condition that affects 1 in 75 women. Check out the website to learn more about the risks, symptoms and what you can do to get involved.

 

 

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Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation

Posted September 26th, 2016 by

September is Global PF Awareness month, and a few weeks ago,  members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn more about the latest research as well as a new national registry for PF patients. Below, check out our recent interview with Dr. Gregory Cosgrove, Chief Medical Officer at the PFF, and see what he has to say about the future of PF treatment.

Tell us a little about the Pulmonary Fibrosis Foundation— how did you get started with it?

I feel very fortunate to be a part of a team of dedicated medical experts, staff, and volunteers who devote their time and effort to advancing the Pulmonary Fibrosis Foundation’s (PFF) mission. Two brothers, Albert Rose and Michael Rosenzweig, PhD, founded the PFF in 2000 after losing their beloved sister Claire to PF. Both brothers were also diagnosed with the disease and subsequently passed away. Their vision and dedication continues to inspire us to support the Foundation’s mission to mobilize people and resources to provide access to high quality care and lead research for a cure so people with pulmonary fibrosis will live longer, healthier lives.

Since 2014, I’ve had the wonderful opportunity to serve as the Chief Medical Officer (CMO) at the PFF overseeing medical affairs to help facilitate and drive key initiatives. In that time, the Foundation has worked with the pulmonary fibrosis medical community to establish the PFF Care Center Network (CCN), where people living with PF can find experienced medical professionals who understand their disease and support services to improve the quality of their lives. Simultaneously, we launched the PFF Patient Registry and were thrilled to announce in March that we began enrolling patients. The PFF Patient Registry collects and stores clinical data, biological samples and high-resolution CT scans of patients with all types of PF. This combination of data from so many patients, including those with less-studied forms of PF, will have an enormous impact on future research.

What are your thoughts on the current state of idiopathic pulmonary fibrosis research?

 I’m very encouraged about the way we’re moving forward to assist patients, and the collaborative research that’s being developed. The momentum we’re achieving with two approved therapies for idiopathic pulmonary fibrosis (IPF) has further stimulated the field, motivated researchers, physicians and patients alike. The Pulmonary Fibrosis Foundation’s PFF Care Center Network and the PFF Patient Registry enhances access for patients who wish to participate in research and ensures that they are able to do so in a safe, secure environment. The PFF has developed a network of 40 CCN sites across the country. We hope that closer and more accessible care and an engaged and collaborative medical community will ultimately result in more quickly delivered, expert and comprehensive treatment for patients with PF.

 The PFF recently launched a national registry for pulmonary fibrosis patients — what does this mean for future research?

The PFF Patient Registry is an important, comprehensive research tool available to help us in our fight against PF. The Registry is a database of de-identified (made anonymous) medical information, collected at participating CCN sites and gathered from at least 2,000 people living with PF. Together, the CCN and Registry will become an unparalleled resource for future research focused on developing treatments for PF.

 Can you tell us more about the PFF Care Center Network and how it might benefit members of PatientsLikeMe’s IPF community?

The PFF Care Center Network (CCN) is a consortium of academic medical centers and community-based clinics with expertise in caring for patients with PF and a commitment to improving the lives of those with the disease by providing the highest quality care. In addition, CCN sites offer numerous support and educational opportunities for patients and their families including resources and medical expertise for local support groups, PFF educational materials and an annual educational event.

September is Global Pulmonary Fibrosis Awareness Month and we encourage the members of the PatientsLikeMe IPF community to spread the message to family, friends, healthcare professionals, colleagues, neighbors, community leaders and others. To learn more and get involved, visit our website and download our online toolbox.

The opportunity to serve as CMO really is a unique chance to make a valuable contribution to this field and improve the lives of many individuals. I am hopeful that the PF research community will be successful in identifying treatment(s), and eventually a cure.

From your perspective, what is the PatientsLikeMe / PFF partnership all about?

Through this partnership, the PFF is able to offer the unique tools that PatientsLikeMe provides through its website to the PF community. The Foundation is looking forward to providing even greater patient engagement and improved outcomes thanks to this collaboration.

 


Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

Posted September 19th, 2016 by

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago.

The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”  

Tell us a little bit about yourself. What was life like before your diagnosis with MS? 

Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish).

We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS diagnosis experience like? 

In early 2006, a random tingling in my legs appeared as I was waiting to cross a road, and did not go away. Occasionally, I would fall over when walking, or accidentally go to the toilet in my pants. I was very confused about what was happening to me. After a few months, my NHS doctor referred me to a consultant who said it could be the first sign of MS. He said I could get tested, but if it was MS there is no treatment. So I chose to not be tested.

Since MS, how has life changed? How have you, as some members say, adjusted to your “new normal”?  

It has taken some time, but I have adjusted to my “new normal.” My wife, family and friends also adjust when I am with them. I make sure I plan any activities in advance, pack a change of clothes just in case, go to the loo before I go out, plan routes, pack my own food. I have occasional challenges, but I am now happy again.

On your PatientsLikeMe profile, you mention that for the past three years you’ve been following a program called “Overcoming Multiple Sclerosis”(OMS), founded by Professor George Jelinek, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne. How does this program work? How has it changed the way you manage your MS? 

The OMS program has three core parts. First, I adjusted my diet to reduce my daily saturated fat consumption to 10g or less. It’s a vegan, whole food diet plus fish and Vitamin D.  I also exercise for half an hour, five times a week. And finally, I meditate for 30 minutes every day. I started slowly with a few minutes a day, gradually building up to 30. Now I generally do my 30 minutes when I need to rest, or during my train commute to work. Mindful meditation now goes quickly, it resets my body and I feel great after!

What can you do now that you couldn’t do before? What are some challenges that remain?

Mental – I can smile honestly. A few years ago I was scared and confused about what was happening …my slow but steady loss of ability and independence. I lost hope and found myself in a dark place. Nowadays, since following OMS, I can enjoy life, be optimistic and look forward to the future. I can make friends and family happy. People often tell me they are inspired by my positivity.

Challenges – occasionally I am still overwhelmed by MS and how it can affect everything the body and brain does, but I have found this usually means I have not had enough sleep!

Physical – I can walk further, more strongly. From 2006-2014 my walking slowly deteriorated until I lost confidence, was constantly using a walking stick and avoided going out. OMS gave me the confidence to exercise, build strength and try walking without my walking stick. Astonishingly, it eventually worked! I still use my walking stick sometimes, and if I have a day of exceptional long walking or physical effort I may use a wheelchair the next day (but these are very rare occasions). On a good day I will fold the walking stick and put in my rucksack. On a really good day I will leave home without my walking stick at all!

Challenges – I definitely still have physical limitations. I am sometimes frustrated that I struggle to carry a shopping bag and cannot run, but I keep practicing … it will come one day!

Toilet – I have more control and confidence than I have had for years. That is in part from experience and better management, but fundamentally things work better than they used to.

Challenges – Accidents can happen if I have not taken precautions, but this is very rare.

Neuropathic pain – 18 months ago I would wake up every night, literally screaming from pain in my left arm. My neuro prescribed Amitriptylene , which stopped this neuropathic pain. OMS has given me the confidence to carefully reduce the dose. I have not taken any for 13 months now and have no pain.

Brain fog – My brain is generally clear, and I have more confidence in it.

Challenges – Remembering to take things slow.

Diet – I am enjoying varied, delicious meals every day. My ability to taste is much better since following OMS…I can even recognize the difference between rice cakes!

Challenges – going to a restaurant used to be a challenge, but I have found restaurant staff and chefs are very happy to help if I ask them to make changes to the meals to be OMS-friendly.

Friends – I have made loads of friends who have MS through OMS. We are all helping each other. In a funny way, since finding OMS, I am actually happy because of MS.

Challenges – Time!

It looks like you’ve reported taking Baclofen on your PatientsLikeMe profile. How has the combination of taking a prescribed treatment along with following the Overcoming MS program holistically impacted your health outcomes?

I have had Secondary Progressive MS (SPMS) since the beginning of my MS nearly 10 years ago. There is no medicine for SPMS, just Baclofen to reduce muscle spasms.

My neuro told me to take Baclofen as/when I need, so I don’t have a set amount. I am quite relaxed with it but try to take as little as possible — these days I typically take 10-40mg/day. I went through a phase of not wanting to take Baclofen, but that simply resulted in me shaking more, so it was visibly apparent that I need it!

18 months ago I took Amitriptylene to reduce neuropathic pain, which worked and it was amazing, but I reduced that and eventually stopped completely soon after I went on an OMS retreat.

OMS has helped me understand that medicine is fantastic when it is needed, but you don’t necessarily have to use the medicine forever. (Of course discuss with your doctor).

OMS has given me a way to help myself, without waiting for SPMS medicine*. So whilst I am ready to accept medicine, I do not rely on it. Baclofen reduces my spasms — an important, but limited function. OMS diet, exercise and meditation makes me feel healthy, proactive and positive and enjoy life. Another great thing about OMS is that it also gives my family and friends hope, because they can see me being healthy and happy. I feel like I can overcome the challenges of MS!

*I am actually also on the MS-SMART trial, taking a small dose of medicine/placebo.

Other than this program, what else do you do to manage your MS? How has regularly tracking your symptoms on PatientsLikeMe helped? 

Tracking my symptoms on PatientsLikeMe has been great to see how I have improved over time. It was great when I showed my wife my PatientsLikeMe graphs and she saw my entries were honest (she remembers the bad days I had in the past, so she knew I was completing it truthfully). She was really happy to see my improvement.

The PatientsLikeMe network is fantastic, and I have been lucky to receive some good advice from others in the network. Occasionally I am even able to help with someone else’s question. It feels so nice when someone reads my post and ‘likes’ them. MS can be lonely, but the PatientsLikeMe network connects me with others who know MS from the inside — it ensures I do not feel alone.

What’s your best piece of advice for other MS patients? 

Have hope. Follow OMS —it is not an instant fix but the worst that can happen from OMS is that you eat a healthy diet and make friends!

 

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Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

Posted September 15th, 2016 by

It’s been quite a year for the 20152016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships.

Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care.

The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives.

As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:

 

 

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

Posted September 8th, 2016 by

Iris posing on her motorcycle

September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Here’s what else she had to say…  

Tell us a little about yourself. What are your hobbies and passions?  

I’m an outgoing young adult who enjoys motorcycles! Since my diagnosis everything about me changed. My hobbies, my way of thinking, how I view life. One thing that has not changed is my passion for motorcycles. When I gain my strength back and summer comes back around that will be one of the main things I’ll be doing! I was a very selfish and materialistic person before my journey. Now that I have endured a long eight months of treatments, my hobbies and passions have changed. I enjoy reading about others who are going through a tough time and offering an ear or hand to help. I want to share my story to help others and let them know they are not alone! I want to raise money and participate in walks for cancers, not just ovarian but all types of cancers. I started crocheting as a therapeutic way to get through my transplants which helped me so much. Spending time with my family was always and still is a must.  

What was your diagnosis experience like?  

My journey began in July 2015 when my gynecologist found a mass on my ovary. I had my first surgery due to this immature teratoma in August, where I lost my right ovary and fallopian tube. Then I received the call that they found cancer cells in this teratoma, to which I should follow up with chemotherapy. I was devastated I couldn’t believe the message, I just remember crying and wondering why me. I did not follow up with chemotherapy, due to the fact that I was feeling good after surgery and had high hopes that I would be fine.

As the months passed, I began to feel pain in my lower back and thought nothing of it. I even mentioned it to my oncologist who said it was probably nothing, so I continued with my life. That was back in October. By January the pain had become so severe that on Friday, January 15, I left work early and went to the emergency room. There I was admitted and told my cancer was back with an aggression so intense I would have to start chemotherapy that Sunday.

How has life changed for you since your cancer?  

My whole life stopped along with my heart! I couldn’t believe it but I kept that smile and high FAITH and hope on! So began my journey as a cancer patient. I was told I would have to go through four rounds of very intense chemotherapy known as BEP. After that I may need to follow up with surgery.

It’s now been seven months and I’m still in the life of a cancer patient. I underwent two more life changing surgeries. On top of the surgeries, they wanted me to do two stem cell transplants. The second surgery I had to go through was the most difficult one for me. I didn’t even want to go through with it. I was ready to give up and just go somewhere beautiful and live my life out. Then I realized my time on this earth is not done, I have so much to do and so many people to help! So I did the surgery. They did a full hysterectomy, leaving me with a huge scar on my abdomen. I was even told that I may have needed a permanent colostomy, which when I woke up I did not! The moment I was being told this was after I had endured the four months of chemotherapy so I was mad. My emotions could not be explained at that moment. It was the first time I cried in front of anyone about my cancer. 

Then the next surgery I had to do was a removal of a mass in my chest. Chemotherapy killed a lot of the tumors that went from my pelvis up to my chest but left me with two. After having my last surgery, I was super sad! Knowing that I could not have a baby made things very difficult for a woman my age. Now I had to deal with them cracking my chest cavity open and leaving another scar. To get past that and prepare my mind for this, I would tell myself I’m going to look like the corpse’s bride. It was my way of coping with a new scar. So two weeks later we did that surgery. The night before the surgeon called me and told me they were going in through the side, which made me very happy! But with one little defect, one of my vocal nerves would have to be sacrifice, due to the tumor being too incased around it! I thought to myself oh of course. I got through both my surgeries just fine with a new voice I call Barbie. 

 I’ve become a super grateful person and an all-around different gal.

Iris shares her cancer journey on Snapchat

September is Ovarian Cancer Awareness Month. How do you share about your condition, and what have you learned in your journey that you think people should know?  

I will be participating in the 5K Ovarian Cancer walk Sept. 11, now that I have completed my treatment plan. I have shared some of my journey on Instagram but honestly, I shared a lot more on Snapchat to update my family and close friends. I have always been a strong willed person so for people to see me in such a weak stage bugged me. But since this journey I have broken out of that shell. I have taken many pictures since January until now, I even did videos. Now that I am at the end of this treatment plan I want to help others and let them know they are not alone! I have been working with doctors, an art therapist, nurses and anyone I can connect with to get my story out there. I want to begin to speak at events and sponsor walks. I will also be connecting with young adults’ cancer society.

In my journey I have learned many things, about myself and life. One thing that has stuck with me is how to be grateful. I’ve learned to feel for others and understand that everyone is different. Not everyone can take a situation and learn and grow from it. I want people to know that even though they may be going through a hard time in their life, the sunshine does break through the clouds. That they truly are not alone in their suffering. That there are people out there who can feel for them. Always educate yourself about what’s around you to help yourself. Having a POSITIVE mindset, I believe, makes a big difference. Staying positive through everything is what has also helped me a lot.

Since joining in May, you’re pretty active on PatientsLikeMe – how has it been for you to track your health and connect with others on the site?  

Although I have just recently joined this year, connecting with others has been a pretty joyful situation. Being able to vent about how I feel and ask other patients for advice has been amazing. Tracking my health on PatientsLikeMe keeps me on track with what to ask doctors and look back at how bad some of it was. This is the only website I use to track and vent about my cancer. It’s easy to use and it was located on my Patient Gateway.

How has dealing with cancer as a young adult been?

Dealing with this cancer at just 28 has been one of the most difficult things put in my path. I had just landed the job of my career, as a Real Estate Paralegal. In an office were we all get along and everything felt just right. I was living by myself and getting the grasp of being a young adult on her own. I had plans to travel and plans for family birthdays that couldn’t be done. Dealing with my mother having sarcoidosis was another thing that ran through my mind.

I couldn’t be sick not now, not at this time of my life. I couldn’t vent to anyone about it because I didn’t want to stress anyone out. I was the healthiest, strongest person in my family — to be sick with cancer was devastating. I couldn’t put it in words, the way I felt. Finding people to comprehend what I was going through was tough. Going to appointments and never seeing people in my age group made it even worse. I felt like the only young adult whose life had changed. Seeing everyone continuing to live their lives made me feel even worse. I feel like there isn’t that much support for young adults. I also feel like a lot of these young adults don’t want to speak about what they have been through. I can completely understand why. It’s tough, I never wanted to be looked at differently or anyone to feel bad for me. So all I can say is that it’s tough, but I have learned and grown from this and now I want to help others.

 

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The community speaks out for Pulmonary Fibrosis Awareness Month

Posted September 1st, 2016 by

How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up.

In a recent forum thread, members chimed in with the one thing they think people should know about what it’s like to live with PF. Here’s a snapshot of what they had to say:

 

“…how hard it is to deal with the fact that you can’t do things you used to do and that even things we typically take for granted like showering are very difficult as the condition worsens.”

— PatientsLikeMe member living with PF

 

“Don’t settle, we have options, find a doctor that specializes in interstitial lung diseases which pulmonary fibrosis is part of. Let them decide with your help as a patient what is best for YOU. We are always so quick to put a pill in our mouths and hope it works. With this disease that isn’t necessarily the answer. Live with IPF/PF and advocate for your health.”

— PatientsLikeMe member living with PF

 

“I have lived with pulmonary fibrosis since i was diagnosed 10 years ago but i am certain i had the symptoms many years earlier. Since my diagnosis, which the medics tell me is idiopathic, i have been on the roller coaster that many patients will be only too familiar with. Nobody knows the cause. Nobody knows how to treat it. And nobody knows a cure. And until there is a significant increase in research funding nobody ever will.”

— PatientsLikeMe member living with PF

 

You can see the rest of the responses and add your own experience here. And be sure to check out the Pulmonary Fibrosis Foundation’s awareness month toolkit to find out how to get involved on social media and beyond.

 

 

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