7 posts tagged “patient author”

“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David

Posted May 23rd, 2013 by

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life.

David Burns

Are you living with both psoriasis and psoriatic arthritis?
Yes, I am living with psoriasis, arthritis and also Crohn’s.

How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age?
I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst was growing up with psoriasis, from a social perspective. It shattered my self-confidence and self-esteem. I haven’t had a girlfriend my entire life.

What impact has living with psoriatic arthritis had on your life?
Well, I’ve basically hit the inflammatory jackpot. The odds were so low that I was destined to develop psoriasis, and from that arthritis, and following that, Crohn’s. Over the past few years, I’ve been on 4 different biologics, each failing to provide me with the promised relief that I crave so badly. I’ve tried many different systemic, biologic, and topical treatments over the years, all without any avail. I’ve been through hell and back and I’ve come out smiling.

About three years ago, my psoriasis and arthritis flared up so badly that I was a prisoner to my bed. I had to pull myself along the floor to even get to the toilet, my arthritis was that bad. I was put on extremely high doses of steroids. I put on a lot of weight due to the steroids and eating tons of junk food, and fell into a deep depression. I lost friends and had to drop out of school because I missed so much. As my conditions started to improve, I couldn’t stop myself from looking in the mirror and recognizing what I’ve just been through. I’d developed extremely strong mental strength. I’d reached the lowest point of my life and come out stronger than ever.

I used that strength to motivate myself to lose the weight I’d gained. I was weighing in at 118kg (260.14lbs). I took up interval training and weight lifting. There were days that my arthritis and psoriasis were so bad, but I used the mental strength I obtained and pushed myself as far as I could. The days that I was feeling the worst I’d make sure I trained double as hard. I started eating clean and I lost 40kg (88.18lbs), as well as gaining muscle. I’ve now taken up bodybuilding. My goal is to prove that anything is possible and to never let your health get in the way of your dreams. I still train 6 days a week. I use my previous and current pain as motivation to push me that extra step. So in some aspects, I’m grateful to have had the opportunity to develop this outlook on life, as I can apply it to every other aspect of my life. I started up my own IT company and I’ve been working really hard to develop it. I’m currently 85-90% covered with psoriasis, and I’ve been using crutches to walk around for the past couple of weeks. I still haven’t given up hope yet.

What’s it been like to connect with other psoriasis and psoriatic arthritis patients on PatientsLikeMe?
It’s been an enriching experience connecting with psoriasis and psoriatic arthritis patients on PatientsLikeMe. I’ve formed friendships that will last a long time. It’s very rare that you find people that share the same pain that you get from suffering with psoriasis and/or arthritis. It’s a great feeling being able to connect with people on an emotional level and really feel that they know what you’re going through, and that they really do understand. My friends and family try to understand what I go through, but they just can’t relate, as they’ve never experienced it for themselves. PatientsLikeMe takes away the “imagination” factor that my friends and family can only provide me with, when they say, “I can only imagine what you’re going through.”

What is one bit of info that no psoriasis or psoriatic arthritis patient should be without?
Every psoriasis and psoriatic arthritis patient needs to know that there is someone out there that is going through exactly what you’re going through. They should know that you’re not alone in this fight. There may be times when you’re cornered, with your back against the wall, but you’ll make it through with strength and hope. It’s not an easy feat by any means. However, life would be boring without a challenge. Try and find someone on PatientsLikeMe that understands what you’re going through. It helps, trust me. It’s a good feeling to know you can fight against your disease with someone else at the same time. They should also keep in mind that there is treatment that will help out there. You just need to be patient enough to find it. I’ve tried 4 biologics, without relief, but I still haven’t given up hope.


“Not in this fight alone.” An interview with multiple sclerosis patient Monica

Posted May 16th, 2013 by

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

Monica

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.