This year’s second annual Denim Dash has so far pulled in over $55,000 in donations from across the globe! Patients, parents, friends and family just like you have taken the time to run/walk/swim/bike/or roll 3.1 miles in support of the rare disease community. This 5k virtual dash was done between March 19th and 27th. What made the dash so successful? Probably the ability for anyone to participate at any time, in any place that suited them.We were able to speak with some dashers about this year’s journey and here’s what they had to say:
Q: Was there anyone in particular you were running for? Who?
A: I actually was participating for myself. As I describe on my Crowdrise page I was diagnosed in December 2014 with a very rare, debilitating disease called Dercum’s disease.
It is genetic, but the etiology is still unknown. This has been quite a journey. I was always healthy, athletic – skiing, hiking, biking, runner, still a soccer player at the age of 48. I couldn’t understand why I was forming these bizarre painful lumps within my joints, along my blood vessels. My lymph system felt like it was on fire. I suffer weird neuropathy in my hands, arms, feet and legs from time to time. I would be so exhausted from pain I could barely turn over in bed, let alone get up and walk. These tumors, anywhere from pea size to walnut size and larger are, so painful I can hardly bear to wear clothes, let alone touch them. Yet, they were not distinguishable from normal tissue on Ultrasound, MRI or CT scan. Except for one case in my knee in 2013, where they saw “aggessive cysts growing in my synovial fluid” I had surgery to remove them January 2014. I immediately got worse and they stared forming everywhere quickly within eight months.
My father died of a rare anaplastic cell cancer within six weeks of diagnosis when I was thirteen. My mother died of a rare mullerian cell ovarian cancer when I was 22. My brother has been battling Non-Hodgkins Lymphoma for 22 years.
I’m blessed though. At my brother’s persistence I went to see “Zach”, Dr. Zachary Spigelman at Tufts, my family’s oncologist, who specializes in blood and lymph. He understands how rare I am and in turn, how rare my genes are. He believed me, over all the myriads of doctors, including my own primary care, who is an endocrinologist, my ob/gyn, a gastroenterologist, and a rheumatologist, who didn’t want to tackle the whole problem but just treat symptoms.
Zach ran tons of tests. He asked Dr. Stephen Yood, a thoracic surgeon to biopsy two areas. Dr. Yood had never seen anything like it in his 28 years of surgery. The tissue was forming all around blood vessels and nerves. He said “Susan, you do realize, that whatever this is, it is inoperable.” To which I replied, “Dr. Yood, I know that. You just take as much of this tissue as you can, to reveal what it is.”
They ran the findings through the NIH database to finally discover on 12/10/14 the Dercum’s or Adiposis Dolorosa diagnosis. I was so thankful for it to be revealed, but then overwhelmed because there is no cure or effective treatments at this time and it gets progressively worse. This disease has been around since 1892, (Francis Xavier Dercum) and it is still an absolute mystery as to how it occurs, how to stop the tissue from forming, how to reduce or prevent it’s debilitating crippling nature.
By profession, I am an engineer. We use system approaches to solving the entire problem, not just alleviating the symptoms. We get to the root cause. We also work collectively to do this, which is not what I have been seeing with my case until Dr. Spigelman stepped in. I’m determined to change this. To work with many outlets to find the cause and cure.
The reason I stated “I’m blessed” is that people suffering from this disease, still don’t know for certain. They go from doctor to doctor like I did. These doctors tell them, “They’re just lipomas – they shouldn’t hurt” or they often get misdiagnosed with Fibromyalgia or just made to be hypochondriacs. Many can’t afford testing to begin with. I can remember telling my own primary care Dr. Spigelman’s diagnosis and he still didn’t believe it.
I spent all of last year doing my own internet research and consulting with those who have been designated specialists in their fields. This is how I found out about Global Genes.
So …why did I participate in the Global Gene’s Denim Dash? In December I saw the patient grant award, but honestly was too exhausted from everything else I had accomplished to put in the request.
When the virtual race announcement came – I knew I had to work towards this goal. 5K’s used to be my events. This one was special though. I want to get the word out to the medical community to learn about this disease and others, I want to let other people who suffer from Dercum’s to realize there are holistic ways to live with this disease until cure is found. I want to advance research in this area.
It was my way of raising awareness for my disease and helping the rare community.
I was shocked that I was able to go almost twice the distance. I could not have done that a year ago.
Q: Were you joined by any close friends or family?
A: My team was made up of my college roomate, Laura and her husband, Steve; my longtime friend, Jill and my two nieces, Lisa and Kristy. Each one of them I might add are accomplished marathon runners. Knowing they were running with me virtually, gave me the inspiration to go up to the Boston Marathon Route that is one mile from my home. I felt like a Champion as I jogged and walked my way to the original start of the Boston Marathon in my hometown of Ashland, MA.
Q: Did you enjoy the experience—and did you feel like you made a difference?
Q: What was your favorite moment?
A: Seeing cars cheer me along and honk! Having people read my bib and encourage me on. I felt RARE but in an amazing way.
(I was running along a portion of a course was laid out that morning for our annual Ashland Half Marathon.)
Q: Did you feel this was a smart/easy way to earn money and raise awareness for charity?
A: Yes – very easy. It was wonderful seeing them love of family and friends support
Q: Do you plan on joining us again next year?
A: Yes – and this time I will apply for the rare patient grant!