Alexandra's journey to health
Donation protected
Hello friends and family,
Our close friend, family member, and fellow equestrian, Alexandra Speidel, has been suffering with the symptoms of a rare genetic disease, called Acute Intermittent Hepatic Porphyria. This last year has been very difficult for her as she developed unusual symptoms such as nausea, abdominal pain, anorexia, muscle weakness, and severe dehydration requiring IV fluids. Alexandra is in the prime of her life, very fit , athletic, and has an incredibly successful horse training business! Porphyria effects young women more frequently, and is genetic in origin, it can be triggered by stress, hormone fluctuations and several other factors.
Many persons afflicted with this disease do not get their diagnosis for months and years, suffer with debilitating symptoms, and unnecessary medical tests, with no relief. This disease can be lethal, and debilitating, patients not getting proper and timely medical care and treatment may suffer permanent damage and disability.
Our fundraising goals are to assist Alexandra to obtain a medical specialist who is knowledgeable in the treatment of this rare genetic disorder. There are several kinds of Porphyria, and the exact percentages of persons afflicted are unknown, however they might range from 1 in 10,000-50,000 people worldwide. We are working on locating and interviewing specialists in California, to determine the best course of treatment for Alexandra, which she desperately needs asap.
The doctors and medical specialists for this disease are out of network for Alexandra's insurance, and she will need to pay out of pocket for her treatment. There will be travel costs as well, plus time off from work for treatment. She is interested in upgrading her medical insurance in the future, as the medical care she has received to date is sub par, so funds will be directed with this in mind as well. Please join me in supporting our dear friend, family member and fellow equestrian on her journey to health! Several of us will gladly match you donation, month by month, for the best possible outcome.
With appreciation,
Joy Bellafaire
Our close friend, family member, and fellow equestrian, Alexandra Speidel, has been suffering with the symptoms of a rare genetic disease, called Acute Intermittent Hepatic Porphyria. This last year has been very difficult for her as she developed unusual symptoms such as nausea, abdominal pain, anorexia, muscle weakness, and severe dehydration requiring IV fluids. Alexandra is in the prime of her life, very fit , athletic, and has an incredibly successful horse training business! Porphyria effects young women more frequently, and is genetic in origin, it can be triggered by stress, hormone fluctuations and several other factors.
Many persons afflicted with this disease do not get their diagnosis for months and years, suffer with debilitating symptoms, and unnecessary medical tests, with no relief. This disease can be lethal, and debilitating, patients not getting proper and timely medical care and treatment may suffer permanent damage and disability.
Our fundraising goals are to assist Alexandra to obtain a medical specialist who is knowledgeable in the treatment of this rare genetic disorder. There are several kinds of Porphyria, and the exact percentages of persons afflicted are unknown, however they might range from 1 in 10,000-50,000 people worldwide. We are working on locating and interviewing specialists in California, to determine the best course of treatment for Alexandra, which she desperately needs asap.
The doctors and medical specialists for this disease are out of network for Alexandra's insurance, and she will need to pay out of pocket for her treatment. There will be travel costs as well, plus time off from work for treatment. She is interested in upgrading her medical insurance in the future, as the medical care she has received to date is sub par, so funds will be directed with this in mind as well. Please join me in supporting our dear friend, family member and fellow equestrian on her journey to health! Several of us will gladly match you donation, month by month, for the best possible outcome.
With appreciation,
Joy Bellafaire
Organizer and beneficiary
Joy Bellafaire
Organizer
San Diego, CA
Alexandra Speidel
Beneficiary