Krystina's Neuro-Behcets Fight
Beschermde donatie
Krystina has the rare auto immune disease of Behcets, she has a more rare form of Behcets that is attacking her brain. She jokingly calls herself "extra special". She is a fun, wonderful, loving, caring, and giving daughter, sister, auntie and friend. She loves life and this disease is slowly but surely robbing life from her.
Not a lot is known about Behcets disease, especially the Neuro form of it. It is terminal disease and we try to not think of that! Thankfully in the last few years more research and treatments are occurring. It is a vascular disease that attacks different systems in the body. Krystina's Behcets started with attacking her digestive tract as a child, then her joints, eyes, circulatory, pulmonary and finally in her teenage years, her brain. It has been a rough battle, she was five with her first surgeries and there has been many more and many tests and many treatments tried since. I have felt quite helpless as her Dad watching all of this. Her Mom and I have done as much as we can through the years but now she needs more than we are able to do.
She can't work anymore, the constant extreme headache, with everything else, was just too much. She has had a constant horrible pain in her head for 14 years. She has had great jobs but no more, her Behcets won't let her continue working. She has been without insurance, medical care and medication for the last few months. Now her money is gone also. Disability is a long process with a rare disease. She is out of options. The stress of this is making her worse. Just her infusions cost $5,000.00 every six weeks and that doesn't include her other medications. Plus there are the bills of living. Right now she is falling through the cracks and we don't know how long before that stops.
We have been blessed to have her in our lives and we want to keep her as long as we can.
Any help would be very much appreciated!!
Not a lot is known about Behcets disease, especially the Neuro form of it. It is terminal disease and we try to not think of that! Thankfully in the last few years more research and treatments are occurring. It is a vascular disease that attacks different systems in the body. Krystina's Behcets started with attacking her digestive tract as a child, then her joints, eyes, circulatory, pulmonary and finally in her teenage years, her brain. It has been a rough battle, she was five with her first surgeries and there has been many more and many tests and many treatments tried since. I have felt quite helpless as her Dad watching all of this. Her Mom and I have done as much as we can through the years but now she needs more than we are able to do.
She can't work anymore, the constant extreme headache, with everything else, was just too much. She has had a constant horrible pain in her head for 14 years. She has had great jobs but no more, her Behcets won't let her continue working. She has been without insurance, medical care and medication for the last few months. Now her money is gone also. Disability is a long process with a rare disease. She is out of options. The stress of this is making her worse. Just her infusions cost $5,000.00 every six weeks and that doesn't include her other medications. Plus there are the bills of living. Right now she is falling through the cracks and we don't know how long before that stops.
We have been blessed to have her in our lives and we want to keep her as long as we can.
Any help would be very much appreciated!!
Organisator
Larry Hulse
Organisator
Monroe, WA
