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Feb. 22, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Ramona’s Story in Honor of Rare Disease Day

Posted by Laura Mullen

I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I also often have mouth sores and occasional genital sores. 

Rare Disease Day iimportant to raise the world’s awareness about rare conditions which are really not rare. I would like the public to know that patients with longterm, chronic diseases undergo many blood tests to put a name to our diseases. We suffer because there are no curesonly treatments that keep the symptoms under control. The challenges we face are of continuous struggle to tolerate fatigue and pain.  

I will be showing my stripes for Rare Disease Day by talking about it with others and sharing information on social media for others to see.