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Advice of Hermansky-Pudlak syndrome
Being a part of the HPS Network. I feel empowered and I've learned enough about HPS to advocate for my needs.
Have been diagnosed with Pulmonary Fibrosis in August 2018
Pulmonary rehabilitation. I am currently waiting for a lung transplant. This has been a huge part of keeping me ready for the surgery and active. I feel worse when I have to miss a session.
Relatively stable and litle progression
Being aware of the medications, foods and supplements that can affect bleeding.
A pain being on Oxygen 24/7!