I got an unexpected email last week from a former colleague, now an attending plastic surgeon living in a different state. I hadn’t heard from him in a long time. He was my senior resident on the Transplant Surgery service in the days before laws restricted work hours for residents. We spent every 3 nights in the hospital and would often work more than 100 hours a week. He was a careful, thorough and fair senior resident, and he was respected by the general surgeons even though he was in training (as I was) to become a plastic surgeon. When I resigned from my plastic surgery residency program, I never spoke to him personally about my decision or my illness.
This man’s nephew is in his second year of medical school and has wanted to be a plastic surgeon for a long time. He was diagnosed just two weeks ago with an autoimmune disorder himself, and my former colleague wanted me to talk to him about his future in medicine, to be an example to him that there are other fulfilling options in medicine besides surgery.
Being asked to meet with this young man made me think back to my diagnosis of scleroderma as a surgical intern. My hands were turning blue in the operating room constantly, I was having reflux symptoms, and red blotches started appearing on my face. I knew something was wrong, but I had to convince the first doctor I saw to draw my blood. He told me “you work too hard and look to good to have anythign wrong.” When I was diagnosed with CREST syndrome, I remember asking the rheumatologic specialists how the disease would progress, and whether I should quit surgical residency. I remember asking if there was anyone that I could talk to about what my future would be like. I tried to connect with other people with the disease, but the first few women I talked to were so diabilitated and depressed I couldn’t relate to them. It seemed no one had gone through what I was going through.
I yearn to help this medical student through this time in his life, but I wonder in my heart what connection, if any, I’ll be able to make with him. He has been diagnosed so recently that I’m sure he’s still in denial. When I was first diagnosed, I certainly denied a lot of realities. I didn’t want to believe that I would have to change a career that I was so passionate about, that I had worked so hard to get into. I didn’t want to believe that I would be in pain every day for the rest of my life, that having a baby and carrying him to term would be so difficult, that my appearance would change dramatically. Denial is a defense mechanism that served me well early on– if all these realities had hit me at the same time, I couldn’t have gone on.
I’m worried with all this baggage that I take to this meeting that I’ll be too intense and serious, that I won’t be capable of telling him what he wants and needs to hear.

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April 14, 2008 at 1:42 pm
Brenda Schoenberg
My daughter is 16 1/2 and was diagnosed with CREST over 3 years ago, although she had some weird symptoms many, many years before – for ex. her tongue would sometimes go white, not just her fingers or toes, years prior.
She’s been seeing a ped. rheum. for several years, but his personality is undeniably horrific as far as I am concerned, and I simply could not continue to take her to him. I’ve all ready developed CLL – I feel he contributed.
At any rate, he saw her at least every 3 months, and wanted every 2, which I refused. She is very bright, busy, and involved in many activities. I finally found an adult rheum. who agreed to see her. Sometimes I’m a bit nervous about this, since most CREST patients tend to be 50 or 60, and I’m uncertain about her knowledge regarding someone younger, although in 1 1/2 years, she would be able to be seen by any adult rheum.
The doctor felt, for example, that Trental should be discontinued as there is no evidence that it helps in CREST. I’m not sure how often my daughter should have PFTs and Echos at her age. She’s had many of each, every 6 months, and thankfully they have been normal. Also, of course, bloodwork. She’s had tons – every possible test of every sort, and I’m still wondering how often that really should be done.
At this time she has Raynaud’s, but her skin seems to be okay, soft and pliable, and she takes very good care of her hands. She has developed more telangectasia, but it isn’t very visible, thankfully. The doctors generally do feel that this is a less important symptom – except of course as you said with regard to self esteem. I buy her whatever makeup she likes, with an eye to quality, and so far it’s been adequate.
It is my greatest hope that as time goes on, research will discover new and better treatments in time to benefit her, and I still have hope that will be so. It can’t come soon enough.
April 16, 2008 at 8:44 am
bluefingers
Thanks so much for your input, and thanks for reading. Hope you come back often. I’m curious to know where you live, if you feel comfortable saying. Many pediatric rheumatologists are great, and I’m sure most have more experience dealing with pediatric CREST than an adult rheumatologist. That being said, CREST is an adult disease.
What makeup do you recommend?
I too hope that research will discover new treatments– that’s our best hope!
Lexa