Don’t Cry for Me, Scleroderma

Dinah Chong Watkins avatar

by Dinah Chong Watkins |

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motivation, Skintight

It was one of those “oops!” moments — the express elevator down to your gut when you realize you hit “Reply All” by mistake. My inbox dinged — a lame substitute for the “You Got Mail” jingle — and I read the message in which the sender referred to me as “a cripple.” A minute later, I received another email from the same sender apologizing profusely for the inadvertent message and their crude description of me. 

Wow. No one had ever called me a cripple to my face before. Sometimes I can see it in their eyes, when they appear sympathetic or curious or even repulsed. The term cripple brought up images of a forlorn Tiny Tim with his sad, wooden crutch. It’s a throwback word like “hobo” or “tramp” from the romanticized pre-shopping carts era when the homeless bundled up worldly goods in a pillowcase, tied it to a stick, and jauntily ended each day with a tin of Bush’s Baked Beans by the campfire. 

Up until five years ago, I didn’t announce my scleroderma. My fingers curled up only slightly, and the only other visible sign was that my face was as taut as a 20-year-old’s. When envious friends asked how I looked so young, hoping to get the name of the plastic surgeon, I would wave it away and joke that it was an ancient Chinese secret.

Well, the secret is the overproduction of collagen caused by an immune system gone wild. But I didn’t tell them that. Scleroderma is too complicated to explain to most people; by the time I get to the gastrointestinal issues, I often see their eyes glaze over. 

But my fingers started to constrict like a bad Jim Carrey movie. They went from being bent to being claws, and now they’re coiled like a Slinky. My condition became in-your-face, and I could no longer hang on to that “normal” label.

At first, I was uncomfortable. I didn’t want scleroderma to be my identity. I’ve heard new acquaintances speak in well-meaning but hushed tones behind my back.

“She’s got some kind of tight skin condition.”

“Oh, so that’s why she looks a lot younger.”

“Yeah, I heard sometimes it takes them early.”

“Well, she definitely should have an open casket. Her face is to die for!”

Rare disease patients often receive three main types of advice. The first comes from medical specialists who are educated, have years of experience, and have participated in research or collaborative projects. They understand the complex conditions that affect a patient’s physical, mental, and emotional state.

Second is the advice from other rare disease patients and caregivers: which treatments worked, what side effects occurred, or who the best specialist is to see for specific issues. 

Finally, there’s the layman with good intentions. Although you only told them about your condition minutes earlier, they become a fountain of uninformed counsel, telling you what to eat or not eat, which medications to take or avoid, and which late-night TV gimmick you need to buy now to heal your condition.

Over the years, in my naiveté and mislaid optimism, I’ve guzzled down quarts of foul, boiling hot traditional Chinese medicine tinctures (now those are ancient Chinese secrets), sought prescriptions for cure-all medications championed in chat rooms, and weathered a very sobering vision of an archangel brought on by a night of meditative numerology chanting. Receiving good advice from a layman is like winning the lottery, and I’m still waiting for my grand-prize Dream House. 

But the tough thing about the layman is that they’re usually someone you know: the elderly aunt who always sends you birthday cards with $5 tucked inside, the thrice-divorced sorority sister with a 21-year-old fiancé, the mail carrier who doesn’t let rain, snow, or the gloom of the night stop them from telling you about the latest miracle treatment. How I wish we could stick to discussing politics instead. The road to hell is paved with good intentions.

I don’t want scleroderma to be my “identifier” because I’m more than my illness. Sure, I’ve got some broken bits, but who doesn’t? 

(Sung to “Don’t Cry for Me Argentina,” with apologies to Andrew Lloyd Webber and Tim Rice.)

Don’t cry for me scleroderma
The truth is I never liked you

Even in my mild days
My bad existence
I’ll keep my hands warm

Won’t you keep your distance?

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Garnet Hoover avatar

Garnet Hoover

very amusing...keep writing!

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Thanks!

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Yara gomaa avatar

Yara gomaa

Hi , dinah
I’m yara gomaa iam a medical student and i have Reaserch about scleroderma and i want from u to till me more about the treatment that u take and also the main cause of my research that my mom diagnosis by scleroderma since 2018 and i want from u to know how u skip the development of the disease for more than 20 years mashallah

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Yara! Sorry to hear about your mom. Scleroderma is so different depending on the person. Where are you going to Med school? I’ve been fortunate that my level is moderate and there are medicines that help manage the symptoms. My best advice is to find a Scleroderma specialist near your mom and be aggressive with the treatment. The other thing is to get into a Scleroderma support group near you. They can give you much more information on specialists near you. Don’t forget it’s not just rheumatologists, but dentists, dermatologists, pulmonary, GI drs too and nutritionists. The Scleroderma Nation Conference is coming up in July, it’s virtual and registration is only $30. There will be dozens of specialists there and workshops for patients and caregivers. I highly recommend you join it. Cheers

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Yara gomaa avatar

Yara gomaa

Thank u for this dinah
My university in Egypt

Dinah Chong Watkins avatar

Dinah Chong Watkins

National conference
https://www.scleroderma.org/site/SPageServer?pagename=national_conference_home&AddInterest=1301

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Yata! Also Google scleroderma clinic trial studies, since your mom is newly diagnosed she’s an ideal candidate. She might get cutting edge treatment

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Yara gomaa avatar

Yara gomaa

Ok i hope to find a new treatment ins

Dinah Chong Watkins avatar

Dinah Chong Watkins

Scleroderma trial
https://www.kadmonscleroderma.com/index.aspx?FULL=true

Taitia avatar

Taitia

Dinah, I’m really enjoying your columns - funny, well-written and spot on. I was diagnosed 3 years ago and only recently started getting the serious effects like curled fingers. I’ve used that ‘turtle on your back’ analogy to describe how it feels to others. Thanks for helping me laugh at my situation and know I’m not alone! Looking forward to many more of your columns. 😁

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Taitia ! Thanks for your encouragement. I’ve had Scleroderma since 1996, my fingers stated curling seriously in the past 5 years. They’ve done incredible advances on managing the symptoms, I urge you to see specialists (GI, pulmonary, rheumatologist, dermatologist) as soon as possible as it’s easier to control the symptoms at your early stage. And join a Scleroderma support group it’s helpful to be with others who can relate to what ur going through. Especially take care of any GI issues early. Take care!

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Taitia! I just remembered, there are quite a few Scleroderma clinic trial studies and most of them require patients who have scleroderma for five years or less. Google it and hopefully you can get into one, perhaps you’ll be able to get cutting edge treatment

Reply
Dinah Chong Watkins avatar

Dinah Chong Watkins

Scleroderma trial
https://www.kadmonscleroderma.com/index.aspx?FULL=true

Reply
Cristina avatar

Cristina

Hi and thank you for your post. I've enjoyed it even though I'm truly scared. I've been dx 3 months ago. Scl-70,Raynaud's, esophagus, joints, "face lift" all of it happening so fast! I'm from Spain, live in the south, 30 °c today and still I need to warm my hands with a heater. There are only 3.500 patients in Spain and still my internist says that it's not a rare disease... That's the degree of knowledge around here. I joined the USA group for scleroderma in order to get information. Could you please post the link where to sign up for clinical trial studies?

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Cristina! It was 74 degrees F today and I was wearing 3 layers, I can relate. A good resource for finding a scleroderma specialist near you in Europe is https://worldsclerofound.org/systemic-sclerosis-world-congress/
You'll need to do a little digging but I found the leading scleroderma specialist in China while I was living there through those leads. Fortunately, he lived in the same city as me. I attended a Global Scleroderma conference in Shanghai (the specialist invited me, it was only open to physicians and researchers) and met Dr M. Mayes there, one of the leading specialists in the US.
For clinical trials, Google Scleroderma clinical trials and see which ones are best suited for you. Be your best advocate!

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Iris L Gerosky avatar

Iris L Gerosky

Thank you so much for your informative comments. This CREST scleroderma is a real trial - especially the Reynauds!
It's good to read all the other peoples issues - not alone in this!!

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Iris! Thanks for your feedback. For me, I’ve found taking amlodipine helps with managing digital ulcers brought on sometimes from the Reynauds.

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Beth A avatar

Beth A

Dinah, you are so witty and funny! Thanks for making me laugh! I have had diffuse scleroderma for 30 years. Its a miserable disease but I am glad to be alive. My dentist told me I'm his second least favorite patient because I can only open my mouth a small amount. Real sweetheart, huh? I think eating really really healthy foods, exercising and having things to focus on and enjoy that take my mind off the disease have helped me. Best wishes to you.

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Dinah Chong Watkins avatar

Dinah Chong Watkins

Thanks Beth! Boy, I hate to think who is your dentist's least favorite patient - probably a 6 year old with all his permanent chompers!

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