Cass' Fight *Follicular Mucinosis*

Our 13 year old daughter Cassidy was diagnosed with an extremely rare disorder called Follicular Mucinosis. It started with a small patchy rash on her cheek and has spread covering about 90% of her face and has taken half of her eyebrow. We've tried multiple different medications, topical and oral, prescribed and homeopathic, and as her body rejects them, this disorder continues to spread. In the last 30 years, there's only been 13 known cases not including her own. We're now at the point where we'll be continuing our appointments every 6 weeks at UCSF, with local dermatologist, rheumatologist and ophthalmologist appointments in between. Because of the rarity of this, many tests done and upcoming tests are not covered by insurance. This on top of our portion of medical bills, specialist copays, gas, food and room stays in San Francisco are becoming too much to handle. We were updated that although it carries many signs of lupus, as of now, the tests came back negative but is continuing to progress and change. The medication we're trying next has some possible side effects including a skin rash worse than she has, increased joint and muscle pain, and loss of pigment in her retina which can result in blindness. As hard as this is to accept, if we don't find something to stop it in it's tracks, it'll continue to spread and we can't take seeing her in pain or watch the toll it takes on her as it moves from her joints to her muscles, and more. Any little bit would help us in this journey to getting our daughter the medical attention she needs and getting her back on track to having a normal life again. Thanks for your love and support. Our family is forever grateful.
https://www.dermcoll.edu.au/atoz/follicular-mucinosis/