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.
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.
Because you’re denied if you have so much as a sniffle. I’m sure she thought those things were just a fluke. No one would’ve found it anyway. She had to do her own research.
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.
Because you’re denied if you have so much as a sniffle. I’m sure she thought those things were just a fluke. No one would’ve found it anyway. She had to do her own research.
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