Recently four medical specialists stood at the foot of Kelly's hospital bed. “You have a rare manifestation of your rare disease”. She'd been admitted to the hospital four days prior after a trip to the Emergency Room after a week of an unrelenting and worsening headache and unexplained eye and eyelid swelling and inflammation.
After three days of testing the specialists found that she currently has inflammation in her eyes, ocular nerve and aorta. The specialists then went on to explain the they have no guidelines for treating her. No clinical studies, no research, no protocol. The proposed treatment involves high risk drugs which have been developed to treat other diseases.
To put the rarity of Kelly's illness into perspective, here are some statistics based upon the few studies that are out there. Fewer than two hundred people have ever had this same diagnosis (Cogan’s Disorder), which is characterized by hearing loss and eye inflammation. Of these 200 people with Cogan’s, less than 50% experience complete hearing loss in both ears. Of these 200 people, less than 10% ever develop inflammation in their heart. Inflammation (vasculitis) of the aorta is one of the only potentially life-threatening conditions of Cogan’s (7 people are known to have died from congestive heart failure caused by vasculitis, aortitis, or both).
Kelly has already lost two of her senses (hearing and vestibular) and now has impaired vision. She wants to do all she can to save her vision, and ideally find a way to reverse any damage to her vision. Kelly would like to pursue an experimental treatment at a facility in Southern California. The two-week procedure will harvest stem cells from her own body and introduce them back into her blood stream. This treatment is extremely low risk as the stem cells are created from her own cells. The ideal outcome would be a reversal of the current symptoms and to stop the disease from progressing any further.
Kelly will need $20,000 for the experimental procedure plus $5,000 for travel, accommodations, and loss of income. She is also hoping for an additional $4,000 to help with their dwindled savings account in order to improve her quality of life and allow access to additional medical specialists once she has the procedure.
A Little More About Kelly Kelly is an uncommonly strong person. This will not stop her. When she lost her balance system in both ears (rare) in May of 2016, she endured months of physical therapy in order to learn to walk again (now she can almost always walk in a straight line). When she had to stop driving for five months she gathered the courage and skill to drive again safely (although currently not in the dark). When she lost all of her hearing in both ears suddenly (rare) over the course of four months, she found apps and adaptations to continue communicating and began learning ASL. When the steroid eye drops used to control the inflammation in my eyes caused cataracts, she overcame her eye-related phobias and had two cataract lens replacement surgeries and one laser eye surgery at the age of 39. When her third son died in utero two weeks before his due date because of a tight knot in his umbilical cord (rare) she faced grief head on and knit twenty beautiful baby sweaters to donate to families in need. This new manifestation will not stop her either. She will continue to love her kids, her partner, and her friends fiercely. She will continue to bake and make good food and create art and hand sewn and hand knit objects. She passionately asks for your financial support as she faces this new challenge with fierceness.