Medical Stories - Fabry Disease: Melissa's Story
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- Опубліковано 5 жов 2023
- Fabry disease is a rare genetic condition affecting around 1 in 100,000 people.
Prior to her diagnosis with this rare disease, Melissa was living her dream of serving in the United States Air Force when she fell deeply ill. After being threatened with a dishonorable discharge due to her failure to meet physical performance standards, she fought to learn what was happening in her body, ultimately receiving a hard-won diagnosis and an honorable discharge instead.
Even though Melissa can no longer serve her country, her heroic determination to receive an accurate diagnosis, and protect her son, positioned her on a road to better health and changed her path to being a patron for other veterans and civilians who need similar support.
Featuring renowned expert: Dr. Eric Wallace, Associate Professor of Medicine, University of Alabama at Birmingham
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Thank you for spreading awareness of our disease! You are a true fighter!
Yes, thank you for this video and getting the information out there. My husband was diagnosed with late onset Fabry's in late 2021. He is now 73 years old and is taking Galafold and doing well. Unfortunately, he is in stage 3 kidney disease as we did not find out he had this until the damage was done. We are so very thankful to the doctors that do treat Fabry's as there are not that many out there that do. Dr. Tuffaha in Kansas City, KS and Dr. Bhandari in Tulsa, OK have our hearty thanks for all their continued help. Thanks to the Fabry's Foundation who guided us in our search for help and information when our regular doctors seemed clueless.
In this day and age why should a patient have to force their doctor to get pertinent tests?
How were her symptoms and conditions not detected/ a red flag/ questioned during her entrance physical for the Air Force? With the rigors of training, and during her service someone should have noticed that she has a serious medical problem, and that something with her health is not normal for a young woman.
You should do a story on DISH disease it took me out of nursing at 44yrs old. Its a progressive painful disease with no etiology or cure