This is Jessica, my 29 year old beautiful great-niece, who was diagnosed about 7 years ago with two very rare types of Fibrosis: Retroperitoneal Fibrosis (a rare disorder in which the ureters from the kidneys to the bladder are blocked by a mass in the area behind the stomach and intestines), & Mesenteric Fibrosis (fibrosis attacking the lower aorta artery). Jessica has had well over 40 surgeries/procedures done in the last 7 years and she's been told that the medications she takes (more than 30/day) will only slow the disease down but that diseases would eventually be terminal. She has a pain pump surgically attached to her spine for a constant drip to help manage her pain for her spine as it is fusing itself together; she has use a catheter as the fibrosis has shut her urethra down and just recently getting to her kidneys; she has a feeding tube in her stomach as she needs to get nourishment somehow:she can't eat sometimes and almost always throws up when she does eat due to the fibrosis taking over her intestines; she has a Medi-Port surgically implanted in her chest that has been removed and replaced a half dozen times so she has scars all over her chest (devastating for her as a woman) for certain IV medications she takes every 4 hours; they've found a 14 inch blood clot in her leg a few months ago they dissolved after 3 consecutive surgeries in three days, and is in chronic pain all the time. We also just found out she has 5 more blood clots in her body and some kind of mass on her lower aorta. : Recently we've found out that the disease has gotten much worse and as of today we found out she has severe infections in her right femur, hip socket and pelvic bone and that the infections will probably spread (possibly Osteomyelitis). She is in a severe amount of pain. The doctors have suggested she be put in a nursing home but her mom will not do that as she is in the nursing field and will take care of her along with help from family and friends.
She's on Medicaid and Medicare but I don't believe this covers everything: in just the past 2 weeks she's had an MRI, cat scan, ultra sound, & bone scan so bills are piling up.
She's been to Johns Hopkins and many other specialists throughout the country but there's just no one out there that knows enough about these diseases.
We need donations for medical bills, prescriptions, gas for going to the doctors several times a week, and whatever else they might need in the future to make Jessica's everyday life as easy as possible for her.