Today was Rare Disease Day. I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a rare disease, but why should anyone else care about it?
I spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.
You see, anyone dealing with a chronic condition eventually comes to terms with their altered life. Grace under fire becomes the status quo. We deal. We lean in. Maybe the big success of the day was taking a shower or getting dinner cooked, but by golly we did it!!
If you have a rare disease, it is a little harder yet. People have never heard of your condition. Your doctor may have never treated another person with your disease before. Your friends and family sometimes suspect that you might be an attention-seeking hypochondriac. You wander the internet looking for answers. There is little research being done for your disease because so few people are impacted by new drugs or treatments. In a world with finite funding for medical research it makes better sense to put the money where the most patients are: cancer, diabetes, heart disease, asthma. I get it.
The purpose of Rare Disease Day is to shine a little light on the many, many conditions that are classified as “rare”. It is also a campaign to raise some awareness about the human impact of being a patient with one of these conditions. To be frank, it kind of sucks!
You see, rare diseases are also referred to as “orphan diseases”. You do feel like an orphan. Alone, alone, all alone. I’m lucky to be hooked up with other people who share my condition, but that is because I live in a large metropolitan area. I have systemic sclerosis*, which is considered the most severe of the diseases in rheumatology. There are only 100,000 of us in the United States (which, if my math is right, is 1 in 50,000 Americans), so if you live in a small town chances are you will never find another person who has the same illness that you do. I am lucky. I belong to a support group and have found online resources, the most important of these being you people who take the time to read my blog.
Here is what I decided is the most important message that I should put out on this day set aside for me and all the many, many other people who deal with a condition/illness that no one has ever heard of before. If someone says, “I have (crazy-ass disease you’ve never heard of before)”, don’t say, “I’ve never heard of that!” in a dismissive manner as you turn away. Say instead, “What is that?” Invite the person that you are talking with to teach you about their unusual condition. Really, it will mean the world to them.
They will feel less like an orphan if you do.
*Systemic sclerosis, which is serious form of scleroderma, is an incurable, disabling, and progressive autoimmune disease that causes inflammation and scarring of the connective tissue of the skin, blood vessels and internal organs. It is often fatal, but in recent years the survival numbers have improved due to new therapies (I love my immunosuppressants!). Currently there is no drug to directly treat systemic sclerosis but there are drugs and treatment strategies on the way. Right now there is a bill in Congress to fund scleroderma research called the Scleroderma and Fibrosis Research Enhancement Act, H.R. 3666.
Yarn, Books & Roses 
Hey! Welcome to my Myalgic Encephalomyelitis – the ugly stepsister of Lupus and MS – we call it ME. It’s all the fun with none of the research, funding, cures or therapies. Another autoimmune disease. Keep on spreading the word and keep on fighting!
Ugh!! Another orphan experience. Don’t you love how we use other illnesses to explain ours; I tell people that systemic sclerosis is the evil cousin of lupus. 🙂
Shine on. We are special!
Great post! Thanks for sharing.
Thanks!
I enjoy your blog. I just wanted to comment today to perhaps help you not feel so alone. I had heard of scleroderma actually years ago before I came across your blog. I read a story somewhere but I don’t remember where. I am glad that you share your condition so matter of factly, gracefully. I am glad to know that folks with rare conditions might actually like to talk about their conditions. I think we are often so primed with “it is rude to ask/inquire, etc…..” and a lot of us probably don’t probe a little deeper for fear of offending someone by appearing to be too nosy or personal. I am a knitter and found your blog from a link somewhere. You knit so quickly and your knitting is wonderful. Thanks for today’s post and I hope you are feeling much better after your recent trials.
Thank you for your note. I do realize that it is risky to ask about someone’s condition; you may get much more information than you want!! I think most people with rare or strange conditions have some short answer prepared. I hope they do. 🙂 Still it is better then to brush off a serious condition as if it was inconsequential.
I love to knit. It is my superpower!
Even with Lupus and fibromyalgia I find a lot of people haven’t heard of them. I often get asked what I have done when walking with my stick, people seem to assume I have injured myself. I too tend to give minimal info, unless people ask more! What irritates me is when people assume that everyone with that condition should be the same stage/degree as if I’m making a fuss because I can’t do what someone else with lupus can!
I know what you’rd talking about; one of my cousins knows a scleroderma person who is doing well, so she assumes I should be also flourishing. These autoimmune diseases just have minds of their own, and there are great differences from person to person. We just have to roll with the punches. 🙂 To be fair, I have trouble understanding my own symptoms, so why would a person not directly connected to lupus or systemic sclerosis “get it”. Organ damage is such a nebulous phrase unless it’s happening to your lungs or kidneys. 😦 This is why it is good to knit and craft! All irritation just flows away and I am in my happy place.
Yes!! Definitely, knitting and crochet are so therapeutic, did you know, back in 1800’s knitting was prescribed for women with depression and other mental disorders!! I could do with a few hours prescribed daily 😉
Ugh! I know Ray all too well..hate the critter! I am also very familiar with systemic sclerosis. I have a family member with it. My aunt passed away from complications from scleroderma but did not have systemic sclerosis. LOVE this blog post and the awareness it raises.
Thank you. I am sorry to hear that your family has also been impacted by this illness. 😦 Hugs to everyone!