Scleroderma Awareness Month 2016

Scleroderma awareness is not all rubber bracelets and t-shirts. It’s about sharing and teaching others about the hard work being done for patients, providers and caregivers

Wednesday is the start of #scleroderma awareness month. There are different types of scleroderma; limited, morphea and diffuse. I refer to diffuse as “The Fast and The Furious” type, because most medical providers have little experience with scleroderma, many patients with diffuse scleroderma find out later in the disease process; which means it’s more likely to be fatal, faster. Kids can get scleroderma as well, forcing them into aggressive treatment on their young bodies. Awareness for the public is a great idea, in addition to the public, medical professionals need diagnostic training. The more physicians and nurses who recognize symptoms and signs, the better the chance of survival for scleroderma patients.

Thirty years ago, scleroderma was a death sentence. Even my diagnosis in 1994, most physicians I worked with did not believe I would live to see my 30th birthday. Here I am in my mid-forties. Make no mistake, scleroderma is a progressive, degenerative disease that hardens connective tissue, which is everywhere. I have fought to stay here by lifesaving treatments and hunkering down to survive the worst. I am only here because of the research done to treat the progression of scleroderma. Donate to research, provider education and patient education and support. You will save lives.

Unfortunately, I will be unable to attend the Scleroderma Foundation, Southern California Chapter walk this upcoming weekend. I will be working on a movie set, thanks to the hard work of those who work to improve lives of all patients living with a progressive degenerative disease. Life didn’t turn out how I planned, but life is good. (Does anyone’s life ever turn out exactly as planned?)

My secret is not a good attitude. (By the way, I hate that poster that the only disability is a bad attitude. It’s fluffy bullshit that makes people who aren’t disabled, feel better. See, my attitude is actually quite bitchy.) The number one reason why I am able to thrive, is because I got treatment for my depression. The chemicals in my brain, actually changed because of my depression. Depression is an unseen side effect of scleroderma. I learned to grieve for my losses and find purpose in my life. Not like some lofty help-the-planet kind of purpose, but reasons I want to be here. I don’t want to be a poster child for scleroderma. I did at one time, but now, no. I want to be known as a mom, sister, writer, comedian and dog love who happened to have scleroderma. I am not my scleroderma. No one is their scleroderma. >(Click to read about my experience with depression.)

    Please visit my blog page, The Mighty Turtle. I was diagnosed back in 1994. I began blogging in 2009. I am currently in a screenwriting mentor program, a stand-up comedian and soon, producer. Life is not over after a scleroderma diagnosis. Research is delaying death for many, but we have much more to do to help patients live with the disabilities caused by scleroderma as well as stop scleroderma from killing those who can’t stop it.

Scleroderma Awareness Month

 

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.

 

Scleroderma Definition & Resources

Having trouble explaining scleroderma?  Here are some links to help, and an example of a definition I use.  Here is some help to #EndScleroWhat 

Medical practitioners, patients and those who love patients, often hear “Sclero-What?”, when trying to educate others.

It’s hard to explain scleroderma to someone who has never heard about it using a brief definition.   Here is what I have been using:

“Scleroderma is an autoimmune disease in the same family as Lupus and Rheumatoid Arthritis. Scleroderma is a progressive, degenerative, disease that  attacks connective tissue anywhere in the body, like  skin, internal organs and blood vessels.”

That is just my definition.  I would love to read how you explain scleroderma!  Please leave it in comments-  it may help others.  Mine is not the only definition.

For the best information, please visit one or all of the links below for an even more detailed definition and list of symptoms.

Non-Profit Scleroderma Resources that provide education, support and participate or conduct research.  

Scleroderma Foundation

Scleroderma Research Foundation

Scleroderma Care Foundation of Trinidad and Tobago

Johns Hopkins Scleroderma Center

FESCA

Raynaud’s & Scleroderma, Ireland

Scleroderma Care Foundation, Trinidad & Tobago

Update, June 12, 2014
A few days after I started a Thunderclap, I found Scleroderma Aware, a website where three organizations have joined to raise awareness.  You MUST check it out, and pledge take the pledge to tell someone about scleroderma.  Please visit, and join this great social networking campaign!  

Did you know there are components of scleroderma that can exist as diseases all on their own?  Here are organizations researching and assisting patients. 

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

Online Patient Support, closed peer to peer communities.  Free to use.   

Inspire

Treatment Diaries

There are many blog posts that have inspired and motivated me, but none like The Spoon Theory, by Christine Miserandino.  She is a lupus patient and I found her post helpful to describe energy levels with a chronic illness.  Scleroderma is one of many chronic illnessness without a cure.  Reading this opened my eyes to the idea that although no one responds to any crisis the same way, we have a lot in common.  No matter what the diagnosis.  No one blogger, or community has all the answers, but we do have a lot to learn from each other.

The Spoon Theory

Please click the links and follow them on Facebook and/or Twitter.  Learn about scleroderma and share information to help us #EndScleroWhat.  We are in this together and acting together will make us louder.  Let’s make some noise about #scleroderma and share this post!

Thank you in advance!

This post was created for a social network campaign to provide a list of different organizations to accompany a Thunderclap  during scleroderma awareness month.  This page  will be updated to add groups.  No one listed on this page has paid, or made any sort of contribution to be listed here.

Please note:  The Mighty Turtle is not affiliated with any organization but Bounce to a Cure.  All resources are provided void of bias and in no particular order.  

Click to participate in Thunderclap on 6/17/2014