Ivonne Villafañe-Mauquer

Sarcoidosis Patient Advocate

I am a Proudly Venezuelan, 42 years old, physician, who graduated from Medical School at the Universidad De Los Andes in Mérida, Venezuela(2006).

I think my story began almost 13 years ago, six months after my only son was born, in December 2008 (although now I am more convinced that this is not the true beginning of this story)...In June 2009 I was diagnosed with hydrocephalus of unknown origin after putting in a ventriculoperitoneal shunt I started to have a long list of new signs and symptoms [fevers of unknown origin, recurrent infections, enlarged liver, spleen, and pancreas, hematological disorders, breathing problems (shortest of breath, recurrent pneumonia), skin problems, joint pain/inflammation, fatigue, etc)  On March 2015 we moved to the USA, it was here, where we were able to confirm the diagnosis of sarcoidosis(after many tests, biopsies full of granulomas, etc).

After the diagnosis, I refused to accept the traditional medical treatment options doctors could offer me at that point (a difficult situation, when you are a physician and you are married to a pharmacist), so I decided to visit a naturopathic doctor. Three months after starting this alternative treatment recommended by my Naturopathic doctor #MeganSchlick at @Adventhealthkc (Paleo diet, exercises, and various supplements).

Now my NEW LIFESTYLE, the fevers disappeared and the other symptoms have improved wonderfully. Of course, I have moments when symptoms flare up, especially before and during menstruation (periods). That is why I started thinking hormonal changes have some kind of influence on my signs and symptoms flare-up.

If we go a little further back in this story, I had my first menstruation(period) at the age of 16 and a few months later I was diagnosed with asthma, mainly triggered by a cold (controlled with inhaled steroids). Now I am more convinced, that supposed "asthma", was one of the symptoms of sarcoidosis.

For all these reasons, every day I am more convinced that hormonal changes have an important factor in sarcoidosis(at least in my case). As a doctor and patient suffering from this disease; I keep studying and researching this rare disease, adding and ordering pieces in this puzzle! Let's keep working together to find a cure for sarcoidosis, but in the meantime, I will continue with my paleo lifestyle and share with my sarcoidosis community, all the things that are helping me, in this battle against Sarcoidosis.

Follow Ivonne @paleo_fighting _sarcoidosis