Scleroderma is an autoimmune disease. Healthy cells are mistaken for unhealthy ones, and the body attacks itself. Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin. Because of the name, people mistake scleroderma for a skin condition.
When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long. For a long time, that was true. Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms. Scleroderma is different with every patient. Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts. Many patients die of complications of this type. Then, there is the overlap kind. In addition to scleroderma, a patient can have another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly. Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly. Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.
I was diagnosed in 1994, at the Madison Veteran’s Hospital. The Veteran’s Healthcare System was originally designed for aging men. So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment. They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired. They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb. They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions. Yes, many people I met in the 1990’s are surprised to still see me alive.
Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it. How do we solve this problem? With medical provider education and patient education. Of course, money is the biggest help because that funds research and treatment. All of these things are happening, but we can do so much more. Scleroderma needs better marketing.
T-shirts and teal bracelets are not enough. A pretty color, a shirt and accessories is not enough. Scleroderma needs a new name and I have the perfect name. One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing. I think you will agree this name, fits.
Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.
It’s easier to say, easier to remember and let’s face it, you can’t forget it. It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey. (By the way, did you know there are two ways to spell whisky?) Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance? See how easy that is? Whiskey Tango Foxtrot. Rolls right off the tongue. So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot. Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”. End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”
There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about. Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.
Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising. Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.
People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine. We all have obstacles to overcome. They are as different as night and day, but they are obstacles. Of course people are as strong as I am. Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.
It has been said to me that, “at least you don’t have cancer.” Maybe. Maybe not. There are treatments for cancer that are already mainstream. There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses. For example: Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression. The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.
You and I are both aware of scleroderma. It’s not enough to wear teal and do a fundraiser, but it helps. Non-profit organizations that conduct research compete with other non-profits. Not out right, but think about it; they are competing. People donate money to a campaign they care about. If it’s not someone they love, those organizations have to advertise to get donations. It’s not good or bad, it just is. I am more likely to donate to scleroderma research than cancer. I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I. Just like everyone else, I donate to causes that matter to me. Yet I can still become absolutely furious in October because the world turns pink. The money used for merchandise could be put towards research and assistant programs. But without merchandise, people won’t donate. We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something. I do it. You do it. It’s very American.
Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here. That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon. I hate awareness, but without it, I’d be dead. Awareness inspires action. Please do something this month to teach others about scleroderma. Thank you. -K
Year-round, researchers are gaining ground in the fight against scleroderma. Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the world to teach doctors, and medical students. Patients are gathering in support groups to learn about scleroderma, and share ways they cope. There is much being done, and all of this needs funding. All of the activities I just listed, are supported by donations, grants and volunteers. Every June, we unite to support the research, education and patient assistance. We share memes, we wear teal, write letters to the editor and/or we gather in parks and walk to raise funds for research of scleroderma.
So if you stop reading this post here, you have read the most important part of it. Thank you 🙂
I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine. I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.
Back to being sick and tired of writing about being sick and tired… So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases. Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured. In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients. I look forward stories of hope, memorium, and humor where we can find it.
You might be thinking two questions: ”
1. Karen, how can I possibly laugh at a time like this?
2. Are you high?
The answer to your first question is that at the most serious of times, I have found a way to find humor. Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next. It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present. On the science side, laughter also releases endorphins, and helps our brain cope with situations. Laugh at what scares you. It will only make you stronger. (Go ahead, research how laughter is the best medicine. Millions of Reader’s Digest readers can’t be wrong.)
My answer to your second question: No, I’m not high. (As far as you know.)
I do mean it when I say I am sick of scleroderma awareness. There are great organization making breakthroughs in treatment, and clues to a cure. If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure. Our lives depend on it. Thank you.
My son is coming home for the weekend. I need to do the dishes and get the apartment ready, so of course, I sit down to write. Why is it I feel so inspired when it;s time to do the dishes. Oh the the quandary of a writer! *Places back of hand to forehead and retreats to fainting couch*
I’m using hard plastic splints to progressively open my hands. These splints were formed around theshape of my hand and every now and then they are adjusted to extend my fingers even more. When using plastic splints in the past, my skin would break down, resulting in slow healing MRSA infections.
So, you all remember my clawed hands, right? (What? You don’t. That’s okay, check this out on Utube It shows how I type, but you get the point.) I have to get going, but I will leave you these “action” shots of me opening the front gate and my splint. And yes, I did my Austin Powers impression while shooting this… and I’m spent.
As a side note, as soon as I am able, I will be visiting the San Diego Veteran’s Hospital OT department, who in 1999 my hands were hopeless. And by able, I mean able to extend my middle finger.
Have a great Friday all!
Want to learn more about Scleroderma? Start with The Scleroderma Research Foundation
Want to help find a cure? Visit Bounce to a Cure.
This blog prefers donations go to research, patient education and caregiver support, so I have a store with products I use and recommend. Want to buy some awesome botanically based french skin care & makeup? Visit my Store!
There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.
Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.
Undiluted essential oils should only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can nourish moisture starved skin because it will penetrate, not coat. Essential oils can appear more expensive, but you need less of the product. To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.
Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one. I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin. Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it. If you have something that works, don’t go searching for an essential oil. (If it ain’t broke, don’t fix it.)
Ahhh, Paraffin. It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…) was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients. A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits. A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath. When I first started exercising again in 2005, I would take a shower before and after. Warming up those muscles before warming up, is good for body and mind.
The professional manicurist in me speaks up:
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.
1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.
2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.
Tips for using a parrafin bath for patients with Raynaud’s:
1. Place hand in plastic paraffin bag, then dip bag into paraffin.
2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)
3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.
4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.
Never, EVER use paraffin wax when you have an open wound or pressure sore. Yes, even a paper cut. Don’t make me show you pictures of infected wounds- it’s nasty!
For more information:
Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.
Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma
To help fund research for scleroderma, visit: Bounce to a Cure
In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.
The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.
If You Skipped to the End
I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!
In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.
Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.
You can make a difference and help fund scleroderma research:
I made a video last night after Krav Maga Class. Short story long: I injure myself more doing daily activities, than when I exercise or train with the supervision of a professional.
When my range of motion was lost, I had to relearn simple things like sitting on the floor and getting back up. It’s a long list and as I become more active, I run into some activity I need to trouble shoot to perform. Luckily, there are people who are trained to help!
Yesterday on Facebook, I expressed my disappointment with I.Am.Scleroderma campaign. I do like and support the foundation who did it, because so many patients benefit from their work. I am not happy with that campaign. You might ask, why not send a letter? Well, I had a thought, expressed it on Facebook and wondered if other patients felt the same way. Plus, I don’t post to make any friends, I just post honestly. I was told once I should think in a more marketing perspective by a former so-called mentor. We no longer speak and it was a very smart decision, but that’s a whole other post.
I write to get conversation going about not only scleroderma & sarcoidosis, but also associated conditions like pulmonary hypertension, Raynaud’s Phenomenon and mental health. So, in the spirit of Scleroderma Awareness Month, and my slacking last year by not speaking out when the I.Am.Scleroderma campaign started, I want to explain to you why that statement offends me so.
This is not an attack on The Scleroderma Foundation. This is my disagreement with their choice of wording for a campaign. Since deciding to independently volunteer to raise awareness and have no attachment to any non-profit, I have the luxury of speaking from my heart, and not from a marketing perspective. I have nothing to loose by sharing my feelings, because that’s all they are, my feelings. They will not buy or sell anything.
Anyone who sees me is free to cuss me out for saying what I feel about the meme. Please comment. I will moderate, but as long as there are no racial slurs or snake oil, I will make sure it is visible. See, it’s not the sharing that was encouraged by the campaign I dislike. I read some great posts by patients and saw some great videos blogs as well. The program is great, but the message is: I am scleroderma. Putting a period between the words does not lessen the anger that statement creates. I have sat n my feelings for a year. One reason was I thought I just needed to calm down. I haven’t. So, here is why I am not scleroderma:
I had my first serious complication from scleroderma in 1996. After two digital sympathectomies, I thought my hands would just return to normal and life would go on as planned. It did not. I continued to loose range of motion all over my body. In the second semester of my sophomore year in nursing school, at then Viterbo College, I was evaluated for physical fitness to continue on to do my clinical rotation. As I reached down and found I could not touch my on toes, it became painfully clear that scleroderma was progressing faster than I ever imagined. I think it was that moment that triggered profound depression and anger.
From that moment on, I didn’t say it, but I thought of myself as scleroderma. I was diagnosed with depression for the first time and received counseling therapy through the VA in Sparta, Wisconsin. It took weeks to get to the statement, but my therapist said to me, “Karen, you are not scleroderma. You are not your diagnosis.”
Skip To the End
It was easy to say, “I am not scleroderma”, but it was not easy to feel. My actions reflected my feelings for years. I took a blow torch to many bridges and hurt people who tried to help me in ways I continue to regret. I have forgiven myself, but I will always regret my actions. I can’t change them and those actions in my past have opened my eyes to create a better future.
So when I say that I am not scleroderma, it comes from a place I worked hard to get to. A campaign called, “I am scleroderma” makes me sick. The name makes me sick. I can in no way endorse it. I want very much to share the blogs and videos from the campaign, but doing so shares the message, “I am scleroderma.” I can no longer find the campaign on the website, but there is a a mess of scleroderma blogs with a Scleroderma Foundation logo with the words, “I.Am.Scleroderma.” on it. I will read the post, but I won’t share it because I cannot share that statement. Well I’d share it with a paid endorsement and a disclaimer that it’s a paid endorsement. (Hey, a girl’s gotta get her pedicure on when she can.)
Thank you for taking the time to read my thoughts about a poorly named, but well intended campaign. My wish when I started blogging in 2009 was to share the message with fellow patents of any illness that they are not their diagnosis. I learned the very hard way, which has made me cynical at times. I only hope this post helped to better explain my reasons for hating the name of it and not the foundation. I will continue to walk and support patients. I will continue to share their useful information. I will also never hold back the way I really feel. Also, I noticed I am unable to find that meme I.Am.Scleroderma on the foundation’s website. Yay!!!
Jedi Wound Care
Last night, there was a “scab” on my middle finger MCP. The skin around it was swollen and red. It was hot to the touch. I decided to use non-stick gauze cover it and applied antibiotic ointment.
I’ve Been Slimed!
Two house later, I took a peak and there was – for lack of a better term, green slime. I removed the dressing and prepared myself for a relaxing soak.
De-Sliming Protocol Engaged
I filled bowl with warm water and hydrogen peroxide. I soaked for about ten minutes. The slime was drawn out by the warm water and the peroxide cleaned the tissue. Note: Never soak in straight peroxide. Always mix with water. Ask your doctor or a wound care health practitioner at your next doctor’s appointment for advice about soaking. It’s not that anyone is withholding secrets: Appointments have time limits. Put this question on your list.
I soaked my hand for almost 10 minutes. I took it out of the water frequently because I was curious and impatient. That’s how I made the time pass quickly. When my hand was immersed in the water/peroxide solution, I could see the “slime” float away from the wound like wafting cigarette smoke.
When finished with my soak, I rinsed with sterile saline solution. (Warm water will do if no saline) I gently dabbed away remaining slime that was now yellowish-white, and allowed it to dry for about 45 minutes.
That’s A Wrap People
It’s not always possible, but after soaking if you can let the wound dry out before covering, skin is less likely to break down. Don’t sweat it if you need to cover it and go. Just use non-stick gauze with no ointment to let the gauze absorb moisture. Bring some ointment and supplies for a clean dressing change with ointment later.
Once the wound is dry, apply ointment to gauze straight from tube. By applying to gauze, you are not compromising the ointment by applying directly to tissue, and you won’t need to use a cotton swab. A cotton swab to the wound may not sound “traumatic” but it has been my experience, the less I touch the wound, the better.
So, a dollop of ointment to the gauze, then apply tape to back of gauze and smooth tape gauze side down over wound. If you have Colban (stretch it- you dont want it to be constricting.) or a thin way to wrap the wound, great. I have uses a thin ankle sock with holes cut for fingers and thumb when I don’t have something. I roam around the house in tape & gauze, but when active, I wrap it for extra protection.
The Law of Attraction
I don’t know about you, but when I have a healing wound, if I’m going to bump into something, I will bump it with my wound. Yep. I have tried to be more aware and cautious, but that only seems to make it more likely to bump or bang it into something. I call it The Danger Prone DaphneEffect. So, rather than fight it, I wrap it. So, yeah, the sock is not crazy. Ya gotta do what ya gotta do!
And now, some before and after pictures. Try not to be eating. If you have question’s please post them in comments. If I don’t know the answer, I will find one or send you to a source that could.
For more information about Scleroderma and related conditions, please visit:
Pulmonary Fibrosis Foundation
And a word from our sponsor: Me