Oklahoma Mastocytosis Society - Our Stories

 

 








 


JUANITA

    
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I am a 54-year-old African American female, diagnosed with Urticaria Pigmentosa in 1991, but had no "real" problems until 1999, the year I was diagnosed with Systemic Mastocytosis.  I try not to focus on this disease too much and just live my life as normally as I possibly can.  I have been on treatments of alpha-interferon twice in the last years, which do help with the attacks.  I'm on daily medication for the disease as well.

I am the mother of one son and the grandmother of the three most handsome grandsons one could ever have.  I even have one that is a natural red head.  Although I was born in Texas, I've lived in Los Angeles, California for 34 years.  I love to grow flowers, vegetables, and herbs for cooking.

I am a collector of Betty Boop memorabilia, as well as buttons (not buttons for clothing), but buttons that carry a message or advertise something.  I have over 200 buttons and if you have some just lying around the hours, send them to me (smile).

I also love music and enjoy reading as well.  I had my first experience of attending the Mastocytosis Society Annual Meeting in Reno last year and was touched by the feeling I felt when I could put faces to names of people I had talked to in the support group.  That's an experience I will never forget.  Until you can look into the face of another person that's suffering the same disease you have and wanting to know the same answers you do about the disease and how it effects you.

As I looked around at the annual meeting to see if there were other African American there, I soon realized I was the only one.  That gave me the desire to try to seek out other African Americans who suffer from this disease, but so far I have not been able to find one.  I won't give up there my search, as there must be more somewhere out there.

I organized the southern California Support Group.  We hope to do great things for the society, as well as keep each other informed on any new medical breakthrough on this disease.  I'm also the person in charge of the Masto Gift Shop.  

I feel so blessed to have found this society and wonderful support group.

Before I became ill with the systemic Mastocytosis,  I traveled over the state with a great jazz and blues singer and had many chances to travel abroad but never did.  Now I regret that I never went.  I also owned my own catering company and catered to many businesses, as well as the music industry.  I did catering for such companies as Sony, MCA, LaFace Records, Warner, CBS and Capitol Records -- which was something I really enjoyed.

I also worked for Edison International, one of the largest electric companies, for 18 years before taking long-term disability (as of 1-5-2000).  I also love to travel and plan on being well enough to start traveling again.  Despite this disease, I have met some most wonderful people through the Mastocytosis Society.  As I quote this to myself everyday: "I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT" as well as "ENJOY EVERY DAY YOU ARE GIVEN". 

 


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