It is so important that doctors listen to their patients. It's also important that they acknowledge when a treatment is not working. This interview makes these points abundantly clear. Before coming to SoCo Dermatology to see Dr. Robin Evans, D.L. (we use her initials to protect her privacy) suffered for many years due to an incorrect—or lack of—assessment of her skin condition. Thanks to Dr. Evans’ attentiveness, D.L. is on the road back to health. We are sharing her story to inspire you not to give up when faced with a challenge that is hard to resolve. We also want to let you know that you don’t have to settle for a doctor who is ‘phoning it in.’ We hope you keep searching for solutions no matter what your issue.
SoCo: What brought you to SoCo Dermatology?
D.L.: I moved to CT last January. I needed new doctors and found Dr. Joel Evans in Stamford. I had a rash covering my whole body and was hoping he could help me figure out what was causing it. I had been dealing with this rash for the past nine years, but in the last two years it had gotten so bad that it covered most of my body. When I found out that Dr. Evans had a wife who was a dermatologist, I immediately made an appointment. Every dermatologist I had ever gone to looked at my rash, gave me a tube of cream, and sent me on my way. I was hoping that Dr. Evans, the gynecologist, and Dr. Evans, the dermatologist, could work together—with me—to figure out what was going on with my skin.
SoCo:Nine years is a very long time to seek help. Did the tubes of cream do anything for you? Were you given any kind of diagnosis? You would think another approach would be taken after nine years and a worsening of your rash.
D.L.: My diagnosis was always either eczema or atopic dermatitis. The creams would calm the rash, but it would never totally go away. I was using such strong steroid cream that I would get these huge bruises on my thighs from scratching because the cream had thinned my skin.
SoCo: How has your experience with Dr. Robin Evans been different?
D.L.: Dr. Evans was THE ONLY DERMATOLOGIST I ever saw who said that my eczema wasn't responding to the cream as she'd hoped. Instead of giving me a stronger cream like every other dermatologist had before, she suggested I get connective tissue disease blood work done. I went back to my gynecologist and had him draw up the blood work. As it turns out, I have lupus with a cutaneous manifestation. It's only attacking my skin! After all of these years, I was finally able to get an answer as to why I was covered with a rash. The relief I felt was incredible and I have Dr. Robin Evans to thank for finally knowing!
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SoCo: It’s great to make such a major breakthrough! However, lupus can be quite a serious autoimmune disease. How have you been treating it?
D.L.: I'm on a three-week dose of prednisone tapering the dose every week. The rheumatologist wants to see how my skin responds when the course of prednisone is done. Along with the prednisone, I'm using a steroid cream Dr. Evans prescribed.
SoCo: Lupus can create so many symptoms, but you said your one manifestation was the body rash. Did anyone talk about why you did not get the other symptoms of lupus like joint pain, headaches, or fatigue?
D.L.: Not really. I do suffer from fatigue, but for the past year I have been really mindful of my diet and I’m taking supplements to stay healthy. I also get acupuncture once a week.
SoCo: You’re lucky in the sense that you didn’t have some of the other lupus symptoms, but having a rash all over your body is no picnic. How did that impact your life?
D.L.: It has been really hard dealing with this. I have four kids and a husband who works long hours so my life is very busy without dealing with my rash. I wasn't sleeping well because I would wake up in the middle of the night scratching. My skin hurt ALL the time. It was hard to get dressed. I'd even turn my underwear inside out so that the seams wouldn't rub on my skin! It was also hard being intimate with my husband because I was always so tired and my skin always hurt. I recently went to a function and was so frustrated because I couldn't wear any of my "cute" dresses. I have scabs and marks all over so I didn't want to wear anything that showed my arms or legs. It's embarrassing! Before being diagnosed, I thought I was going crazy and that the rash was all in my head because no one could figure out what was causing it!
SoCo: When you have this kind of issue it can be tough to get people—and your doctor—to understand the far-reaching implications of the words “skin rash.” The pain, lack of sleep, skin damage, chronic stress, and impact on your family and social life are not trivial and went on far too long. We really hope that all of this is beginning to change for you. Is it?
D.L.: It is!!! Just knowing that there is a name for what is causing my rash has made all the difference! I feel such relief knowing that I'm not crazy and there is a real issue behind all of this! I cried when I saw Dr. Evans to tell her because I was so thankful that she had taken the time to really listen and figure out what I needed to do to get on a path to wellness.
SoCo: What made you want to share your story?
D.L.: I want people to know what an amazing diagnostician and caring doctor Dr. Evans is!
Call us to solve your mystery skin issue! 203-323-5660