Relapsing Polychondritis (RP) and Tracheabronchomalacia (TBM) First Diagnosed in 2015.
‘They’ try to claim that most recent testing showed that I do not have RP or TBM. But here is the kicker. Although from 2011 to 2015 my lungs were so inflamed I had 54 rounds of antibiotics which only tackled the lung infections, but it wasn’t helpful. I was always sick. Why did Dr. Kapur not treat me?? I had been sent to him back in 2010 due to chronic lung infections. The TBM makes it difficult for me to clear my airways, and allow infections to brew.
Then in 2018 I was diagnosed with RP by Dr. Ferrada and Dr. Grayson at the National Institutes of Health (NIH) in Bethesda, Maryland USA. Tests revealed my airway was now collapsing 87%; at 90% you need a tracheotomy. The doctors were doing an International Research to Standardize diagnosing criteria. Their research has identified 3 phoneme groups of patients, and I am in the 3rd phoneme Respiratory complications.
Then in 2020, Dr. Parker from Kingston General and Hotel DIEU, said that he would turn over every rock and help me. Only to do the exact opposite. He said there was no TBM. Then they attack the RP diagnosis, I suspect they say, ‘Since there is no TBM, she doesn’t have RP; or it is not active.’ Let me reassure you, because in 2022 Dr. Sharma identified that my airway was bowing. I assume that means it is collapsing completely? My airway could collapse at any time. I have difficulty swallowing as a result.
My point is another doctor I visited with my son, Wyatt, because he has similar issues as me since he was 6-months old. At the visit, she did not even look at my son. Her intern was more interested and found something, and tried to get her attention. But Dr. Tse at Sinai, ‘swished her hand at the intern,’ and continued lecturing me about RP and that it, “Does not come and go.” She should know, she is a children’s Rhumatologist. Given that, the case the doctors are projecting about me is a lie. RP does not come and go, it is progressive.
I want this investigated.