3 posts tagged “patient interviews”

“The real me” An interview with psoriasis patient and PatientsLikeMe member Maria

Posted June 27th, 2013 by

Here at PatientsLikeMe, we’re continuing to talk with people who are sharing their health experiences to help raise awareness about their conditions and change medicine for good. For our latest interview, we spoke with Maria who has been living with psoriasis since age 14. Some of you may know her on PatientsLikeMe as pinkdragonrider. She recently took some time to talk with us about life growing up, treatments she uses and what she thinks those who don’t have psoriasis should know.

Maria

On your PatientsLikeMe profile, you say you’ve had psoriasis since age 14, with worsening symptoms in your 20’s. Did you experience any stigmas growing up with psoriasis?
I consider myself very lucky in that my psoriasis was confined to my scalp until my early 20s. Growing up, I thought I had the worst, most embarrassing case of dandruff, and itchy flaky skin behind my ears. Thankfully, my hair covered most of my lesions. I was not formally (or correctly) diagnosed until I was 23. Only looking back at my childhood do I know realize that I had psoriasis since my early teens. After I graduated from college, which was around the time I had a critical health crisis and suddenly and violently developed irritable bowel syndrome (IBS), the first plaques on my legs and arms began to appear. Ashamed and embarrassed by my skin, I wore long pants and long sleeves as close to year-round as possible. When I did show my skin, people stared, pointed at me, children asked rude questions very loudly, and I was asked to leave a public pool, because someone said I had leprosy. That was the single-most humiliating experience of my life and I am thankful that it has only happened once.

I am glad that psoriasis commercials appear on TV and my hero is Carrie Dee English. Now that a gorgeous woman has the condition and is not afraid to be photographed when she is flaring very badly, I am much less likely to hide my skin. Sometimes people stare, but they generally do not say anything within earshot and usually don’t point in my direction. So, social situations are less stressful for me now. I strongly prefer to swim or use hot tubs at my friends and family’s houses, though, because they know about my condition and never give me a hard time about my skin. They see the real me and I love them very much for the confidence they continue to instill in me.

Tea Tree Oil Ultra-Moisturizing Body Wash with Olive Oil and Acai Extract is a favorite of yours and seems to be working well. Natural remedies are a big topic of discussion on PatientsLikeMe. What other remedies did you try before finding what works? Any biologics?
When I was first diagnosed, I was prescribed several different topical and oral treatments such as Dovonex, Clobetasol, Nizoral shampoo, and oral steroids. I hated using topical medications, because my BSA was so high that it took an hour or longer to put creams, lotions, or ointments on every lesion and most of the treatments would stain my clothes, towels, and sheets or would thin my skin. The ointments were the worst for staining and feeling greasy or becoming runny with body heat. So, now I refuse to use any topicals, because they are such a waste of my time and money (they are expensive even with insurance) and they generally do not work for me.

As for biologics, I have never tried them and I do not plan to, because I am absolutely terrified of the side effects. I always read the complete list of possible side effects for any drug before using it. I do realize that some of the more horrific side effects are unlikely, but knowing that they are possible is scary enough for me to say, “No way!” For me, having clear skin is not worth risking tuberculosis, cancer, blood disorders, seizures, multiple sclerosis and other issues. So, until there are much safer and more effective products from which to choose, I will stick to my natural and home remedies, thank you very much.

What’s it been like to connect with others living with psoriasis on PatientsLikeMe?
Reading other peoples’ stories and experiences has saved me money, disappointment, and time by knowing what has worked most consistently for others and which medications have been mostly wastes of time, effort, and money. Also, it helps to know that there are others out there who know exactly what I am going through and where I am coming from.

We usually ask our interviewees what they think other psoriasis patients should know. But I wanted to ask you instead, what do you think everyone who doesn’t have psoriasis should know about the condition?
I need people to know that psoriasis is not contagious in any way shape or form. It is not related to leprosy or any other “big, scary” disease. It is a genetic disorder that poses absolutely no risk to you or others. Our skin may not look pretty or handsome, but we are generally lovely on the inside. That’s really what we want you to see; our personalities. Just give us the same chance that you would anyone else. You may be surprised to find that your pre-judgment was wrong. Lastly, if you have a question about our condition, please feel free to ask us in a tactful, kind way. Most of us are happy to educate others about psoriasis.


ALS Patient Interview: Never Give Up

Posted January 19th, 2011 by

We continue our series this week of getting to you the person, not just the “patient.”  Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee.   Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he took part in the PatientsLikeMeInMotionTM program.  Enjoy!

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2166 (Amy) What keeps you motivated?
iceberg (iceberg)

I have always been self-motivated. I have been running since my high school days, running cross country and track in high school. I started to run again in 1978 and even ran a marathon in 1990 when I was 40. I continued to run until 1995 when my foot drop became so severe I began to trip myself.

My wife says I am just too bullheaded to give in to ALS. I think watching my grandson grow up is my motivation too. In 1998 when he was born, I didn’t know if I would see his first birthday. He is now 11.

2166 (Amy) Who do you admire and why?
iceberg (iceberg)This is a hard question to answer. I admire anyone who has ALS and continues to battle to live. When I travel to Washington, D.C., for Advocacy Days and see PALS in wheel chairs with breathing tubes and feeding tubes and see how they are fighting to live, it makes me admire them. “Never Give Up.”

2166 (Amy) How has your condition affected your work life?
iceberg (iceberg) I was a Toll Collector on the Pennsylvania Turnpike until August 23, 2009, and I am now on disability retirement. I have gradually lost the use of my thumbs over the last several years. I was no longer able to keep up with wrapping coins and counting change back to the customers. So I guess you would say it has affected my work life quite a bit.
2166 (Amy)  What’s your favorite aspect of PatientsLikeMe?
iceberg (iceberg) PatientsLikeMe has afforded me an opportunity to meet a lot of people with ALS who I have become friends with over the past several years. Some of the people that I have talked with on PatientsLikeMe I had the pleasure of meeting in D.C. over the past several years. PatientsLikeMe also supported our walk team this past summer for Walk to Defeat ALS. [See photo on left]  My thanks to PatientsLikeMe for the ability to make new friends and talk about how ALS has affected our lives.
2166 (Amy) No, thank you for being so willing to help others learn from your experiences with ALS, iceberg!