Jen Dawson is a sweet young lady and a longtime friend of WYCD who has always helped others in need, but now she is the one who really needs help! Jen suffers from a rare and very painful condition called EDS for which there is no cure. You can easily help Jen by having lunch or dinner on Wed. April 29th from 4-8pm at the Culver’s on 23 Mile & Hayes in Shelby Twp, where she will receive 10% of all sales to help with her mounting medical bill not covered by insurance. Get all the details here…
Jen Dawsonhas Ehlers-Danlos Syndrome, also known as EDS.
Ehlers-Danlos syndrome (EDS) is inherited and lifelong. EDS is a group of connective tissue disorders, caused by various defects in the synthesis of collagen that the body uses to provide strength and elasticity to tissue so it can be stretched, but not beyond its limit, and then safely return that tissue to normal. There are six distinct types of EDS, but a number of mutations with a multitude of symptoms and manifestations. Typically a person is diagnosed with just one type of EDS that they most closely fit. Jen, however, has actually been diagnosed with three of those types: Classical, Hypermobility, and Kyphoscoliosis.
Among her symptoms, there is generalized joint hypermobility, where her joints move beyond the joint’s normal range. The loose and unstable joints are prone to frequent sprains, strains, and joint subluxations and dislocations. This type of instability leads to the early onset of degenerative osteoarthritis and chronic, debilitating musculoskeletal and neuropathic pain that is often out of proportion to physical and radiological findings. Severely weak muscle tone with the joint laxity has led to delayed gross motor development, severe progression in the curvature of her spine resulting in pain and trouble breathing, as well as weakness in the legs that will progress to paralysis resulting in loss of ambulation in the second or third decade. Her skin hyper-extensibility led to her having fragile skin that tears and bruises easily, with severe scarring, and with slow and poor wound healing. This is true not just with the surface of her skin, but all manner of tissue throughout the rest of her body.
Currently, there is no cure for EDS, so medical intervention is limited to taking measures to slow the progression of syptoms, which include the restriction of various activities and treatment of the symptoms. While Jen’s symptoms started from birth, the first serious incident was when she was in the seventh grade and she had a knee dislocation that was so severe it broke her femur. That led to the first of many surgeries. From there, it took five years to get a diagnosis as she went from hospital to hospital and doctors dismissed everything, saying it was all in her head, it was her attempt at seeking attention, and it was drug-seeking behavior. It wasn’t until she was 12 years old that she was properly diagnosed and that was five years lost from early medical intervention.
With all of her medical problems associated with EDS, she could no longer be so active in sports and other physical activities as she was prior to her first surgery. It also took three extra years for her to graduate, which included two years of being home-bound and then her taking adult education in order to get her diploma. In total, Jen has had 32 knee surgeries, 5 bilateral wrist and hand surgeries, as well as a fusion of her left thumb due to her EDS. Her EDS has progressed to the point that, just last fall, her doctors determined that it was medically necessary for her to move permanently from Michigan to Georgia in order to avoid another typical Michigan winter that would have resulted in her being confined to a permanent wheelchair.
All this is why this fundraiser was started and will be held at Culver’s at 23 Mile & Hayes on April 29th from 4 to 8 PM. 10% of each purchase at Culver’s comes back to the fundraiser. Further details will be provided as they are confirmed. The money raised will help offset the medical expenses not covered by insurance that continue to accrue. Every $1 helps.
If you are unable to attend the event and would like to make a donation to help Jen, CLICK HERE to see how you can hep!