My Nonprofit Reviews

I was misdiagnosed for 8 years with “severe asthma “ and was in and out of the hospital more than 10 times in 2 years with recurring infections and pneumonias.
The doctor thought I was being noncompliant with their therapy and kept giving me more and more steroids which only worsened my condition.
In my desperation I found Jennifer’s group on Facebook and thought this sounds like what I have. I tried to convince my pulmonoligist to work me up for TBM and he agreed to do a bronchoscopy but he didn’t know how to do it properly to diagnose TBM so I suffered another 2 years misdiagnosed again with yet more steroids.
Finally a compassionate ENT who took care of me because I got a parotiditis and ended up in the hospital became alarmed when he saw my trachea and heard my cough.
He tried to scope me in his office but felt uneasy about it and referred me to an interventional pulmonary doctor to get a second opinion because he was sure I was being mismanaged by my current doctor and was in danger of dying.
I shared my story in the cureTBM Facebook group and Jennifer encouraged me to fight to get a proper diagnosis and finally I found out I have a 90% trachea collapse and possibly an autoimmune disease that has destroyed my cartilage.
So if not for Jennifer I may have been killed by well meaning doctors who don’t know what they don’t know and dismiss patients that they should be referring to a practitioner that knows more than they do. It’s all about ego and so much needless suffering happens but thank God that Jennifer started CureTBM for those of us rare birds who must fly solo in the medical flock. She’s truly a blessing to the TBM family for her tireless efforts at awareness, resources and education on TBM.