Jun 19, 2021 Latest post:
Sep 25, 2022
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In her adult years, Kelli has suffered from a variety of health issues such as chiari malformation, hydrocephalus, ehlers danlos, fibromyalgia, neuropathy in both legs, gout, leg ulcers, chronic pain syndrome, and lichen sclerosus, to name a few. Currently Kelli is battling a disease called Bullous Morphea and other types of morphea covering her body. The disease causes blisters mainly on her legs and feet.
When the blisters pop, they turn into ulcers. Her pain level is oftentimes off the charts even with heavy narcotics. She has been advised by doctors to stay off her feet as the blisters and ulcers get worse from use.
Kelli has lost most of the muscle in her legs which causes her to stumble and/or fall often. Kelli’s needs are so great she has to be in an assisted living home. She is unable to care for her three year old son without help.
Jeff and Kelli have researched bullous morphea and found case studies done by clinics in different states. She and her doctors are taking the appropriate steps to help her attain eventual referrals (jumping through the insurance hoops) to Mayo Clinic in Minnesota or to John Hopkins in Maryland to be seen in their Scleroderma Unit. The doctors are trying to get her into a study in another state that is for people with this disease.
If the Bullous Morphea gets worse and she cannot get the referral, the next course of action is amputation to make Kelli more comfortable and alleviate her pain.