For as long as I can remember, I've always wanted to travel, always wanted to learn how to play the drums, and always dreamed of owning my own business. There are a lot of hopes, wants, and dreams packed in this native New Yorker, but one thing I never wanted was to be identified as a person with an immune deficiency.
After spending the first 10 years of my life seeing doctors, healers, nutritionists and several other health experts to figure out what was plaguing my body, my path finally led me to an immunologist, one who immediately determined an immune deficiency was the culprit (answers -- finally!). So there I was, 11 years old with a very rare, very incurable immune deficiency which I was told would only hinder my life slightly. All of those things led me to brush the diagnosis under the rug and enjoy my teenage years. My mom however, looked at it in a very different way: exploring options, visiting with experts, looking for the next bit of advice now that we had a diagnosis to work with. Sure, Mom, whatever you think is best. I tried different diets (vegan, yeast-free, removing nightshade foods from my culinary repertoire). I took 15 vitamins and supplements a day. I tried oral antibiotics and topical antibiotics. I tried every skincare brand out there. I wore long sleeve shirts in the middle of August and lied to my friends about why I couldn't go to the beach so I didn't have to reveal my skin by wearing a bathing suit. I hated the body that I lived in but was comfortable in my misery.
It wasn't until the age of 28 that I realized nobody other than me was going to make me feel comfortable in my body. No doctor, medication, healer, diet or beauty product was going to work unless I believed in it and really wanted to do something good for myself. After being referred to a laundry list of doctors that couldn't offer me solutions, in my tired mind, giving up was the easier solution. How wrong I was, and how quickly I found that out.
Over the past year I've started to take control of my own health. I've been going to yoga three times a week, eating healthier, making juice every morning and figuring out like-minded alternatives to living a better lifestyle with an immune deficiency. I've also spent more time talking to my closest friends about my health struggles, something I had never mentioned let alone openly discussed until I had a major lung surgery on March 5, 2012 and the topic became unavoidable.
Last summer, my mom and I went to the Immune Deficiency Foundation's National Conference in Baltimore. When I first sat down in a room of 1,200 people the woman to the right of me turned to us and said, "Who's the patient?" which really reminded me where and who I was. I met some very interesting people, found the overall conference to be extremely informative and I'm happy to say I walked away with a sense of pride and renewed confidence in myself and my immune deficiency, one of 185 out there. I learned that there are very few people in the world with the same immune deficiency as me, but those that have been affected are often in much worse condition than I am. For that, I am exceptionally thankful.
Being identified as someone with an immune deficiency may not have been something I always wanted, but I'm here. More than that, I'm happy to say I'm finally at a point where I can share my story, lend my voice and help raise awareness about the issues that affect people just like me. It's easy to hide underneath your health issues but it's much more beneficial to educate people and help those dealing with these types of health issues many of whom do not have access to the resources that I have by living in New York City.
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