It is my pleasure to introduce Rich S, fellow Skin Writer. Rich and I met through Facebook (he runs the Facebook page I’m A Skin Writer, I Have Dermatographism) back in 2011, and have kept in touch ever since.
Rich lives near New York City, so we met last week for lunch in Lower Manhattan. We had a blast! He’s such a warm, generous person. I’ll let him tell you more…. here is the interview we did just the other day.
Ariana Page Russell (APR): How long have you had dermatographia, and how did you realize you have it?
Rich S (RS): It’s really difficult to pinpoint how long I’ve had it because I didn’t know what I had exactly. I’ve always thought I just had sensitive skin but if I had to put a timeframe on it, I’d say about 6 to 7 years and I’m 42 right now. I remember undressing at home one day and noticing that my ankles were really itchy. After removing my socks, I noticed the pattern of my socks were somehow “etched” in the skin on the tops of my feet and ankles along with an uncontrollable itch which seemed to be spreading all over. This was not the first time and something had to be done. I took a few photos of my skin to show to a doctor since I didn’t know if I could reproduce this “allergy” on demand. I showed the doctor my photos. He snickered, “Oh, clear cut case of Dermatographic Urticaria”. Then my panic set in – “What is that? How did I get it? Will it go away? Am I in danger?”, I asked. He then took out a long swab and removed the cotton from the end. He exposed my forearm and drew a light “X” on my skin and said he would be right back. A few minutes later, I noticed the “X” was starting to turn red and raise up in a 3D effect as if my body was pushing the writing out from the inside. He then came in and said “Yup, that’s it! No allergy tests or blood work needed”. He prescribed an anti-histamine and told me to take one each day to reduce the symptoms but made it clear that there was no clear cut cause or cure and that it wasn’t anything more than a nuisance. It could last for weeks, months, years or the rest of my life.
(APR): Do most people in your life know about it, or do you keep it hidden?
(RS): Those I associate with regularly know about it but I think most people forget since I’ve trained myself to refrain from scratching. I’ve become a master at blocking the itch mentally. I know it’s there but I make a conscious decision to block it out and most of the time, I’m successful. There’s always that one friend that has to draw attention to it; “You have a line on your forehead..did you scratch yourself?” I sometimes keep it hidden so that I can use it to play creepy jokes on people that don’t know LOL! I’ve embraced it; I often joke that of all of the superhero powers to get, how the heck can I save the world by writing on my skin?!?!
(APR): Ha! I think you can save the world by helping people feel more comfortable in their own skin. That’s pretty powerful! What is your experience of dermatographia (symptoms, sensations, etc)?
(RS): On a scale of 1 -10, 10 being the most severe symptoms…I consider myself to be around a 6. I can produce a reaction at any time but thankfully, I’m not debilitated by it or find it unbearable or limiting in any way. My symptoms range from a mild reaction of pink skin, raised slightly and slightly warm….to severe raised 3D welts, intense itching and hot skin if I don’t take an anti-histamine. Once in a while I try to go cold turkey and not take anti-histamines. By day 3, the itch becomes so severe that I have to give in and resume the medication. From scalp to feet it’s “flame on!”
(APR): I love how you say “flame on!” That is so true–the heat really turns up with a scratch for us! What do you do to manage the symptoms? How have you treated/do you treat your dermatographia?
(RS): I take an anti-histamine daily and sometimes multiple times if I have a social function or event in the evening. I’ve tried my best to explore many remedies suggested to me by the community to avoid taking medication and have more than once, used my body for my own research. I have tried: topical lotions and oils, fasting diets, acupuncture, colonics, probiotics, photo-therapy, drinking apple cider vinegar, drinking water & clay solutions as a cleanse, gluten-free diets, limiting histamine-rich foods…..none of which have cured me. If there were positive results, the results were only minimal and not lasting. Until this day, a daily anti-histamine is what keeps me comfortable and for me, no other choice. I have noticed that I build a tolerance to anti-histamines within a few months which forces me to switch brands quite often. It can be costly since most anti-histamines are now over-the-counter. I bet the drug companies love us since we have to rely on this medication daily for most of our lives.
(APR): We have definitely had different experiences in treating our symptoms. As you know, I’ve had success with eating healthy and exercising. My dermatographia is still here, but not nearly as bad as it used to be. Other than conducting all these test, has having dermatographia inspired you?
(RS): I think my inspiration comes from frustration at the lack of knowledge and attention by the medical community. Since it is not considered to be a debilitating disorder (and I consider it to be a “disorder” not a “disease”) I really feel the medical community doesn’t give it much attention. I doubt drug companies would want us to be cured. This has inspired me to do my own research, gathering information from thousands of sufferers I’ve connected with via our Facebook page and help raise awareness. It is shocking that many doctors have no idea what it is. The medical community knows what it is and how the reaction works but can not pinpoint a cause or cure leaving us to think it is just chance. I disagree. I feel if we all combine efforts and share knowledge, then perhaps we can connect the dots some day to find a cure which doesn’t rely on a lifetime of medications to mask the symptoms. While my particular symptoms are not debilitating, I have heard from others that have severe cases and even small children that are teased and made to feel that they are sick. All of this inspires me to raise awareness and get some attention from the medical community.
(APR): Yes, I agree! This is why I started Skin Tome, to spread awareness and offer a space to learn more about the condition. It really is crazy that there’s not more information out there. Speaking of spreading awareness, what’s your Facebook page like? Please tell me about your experiences with people on their, how/why you decided to start it, and how long you’ve had it.
(RS): About 3 years ago, I was doing some research for my own Dermatographia and realized that there wasn’t much of a community linking sufferers. Information was sketchy at best and I became more and more frustrated at the lack of information and the abundance of bad information. I then decided to start a Facebook page. I was the one and only member. But then something started happening…2, 3, 10, 20 members in just a few weeks. “Wow, I can’t believe there’s a page for this thank you!!!” “I thought I was alone and didn’t know what was wrong with me…I’m happy there’s a name for it and I’m not alone!” – Typical comments from our members. The page was added as a resource to the Wikipedia topic and as of today, we have over 2,500 followers world wide with more joining each week. The experience has been wonderful. We get a lot of repetitive questions which to me confirms that doctors are still equipped with little information on the disorder and patients are not getting the answers they seek. Our members share photos of their “artwork” as we encourage those with the disorder to embrace it instead of feel as if they are afflicted with a disease. Members post tips, answer each others questions, share experiences. I find it amazing how many people share their personal story and how familiar those stories are to most of us.
(APR): Yes, isn’t it amazing? Because there’s not much information out there, we have to rely on each other for support. And as I said before, Skin Writing brings people together. Thanks Rich!
All images courtesy of Rich S.