Suzi Sings Again: Diagnosed with Dercums Disease After Mysterious Weight Gain
March 13, 2016
I was always a healthy and active person, I danced ballet as a child and did diving and swimming as a teenager. I started voice lessons at 15 with a lady who was in her 80s.
Dolores Cassinelli was her name and she was a great inspiration to me as a child and then as an adult. I worked with her for many years and learned many operatic arias and roles. I went on to college but kept studying with Miss Cassinelli till she was in her 90s and went into a nursing home.
I have never forgotten how she hardly realized her age, she only knew the great wealth of operatic knowledge she learned as a young woman so many years before in her days with Arturo Toscanini at the NBC. I married and went to a famous opera academy till I left to have two beautiful children,
I became a voice teacher at an art school and stayed 30 years till I retired two years ago. I gained over 100 pounds from 1997-2007 and none of my doctors could figure out why. I was told to write food diaries and eat salads. It was always the same, the food was always the same. I had fatty tumors that invaded my body, I went to surgeons to have them removed.
One was as large as an orange and covered with hair. That surgeon refused to take any more out because he said they were harmless and shouldn’t hurt. But they did, they were Dercums tumors which pressed on my nerves. After dozens of removals and finally finding Dr. Karen Herbst, (Dercums) University of Arizona in Tucson and Dr. Lawrence Afrin (MCAD) at the University of Minnesota, the two doctors who knew about Dercums and Mast Cell Activation Disorder, I am finally losing the weight (45 pounds in 10 months) by avoiding the many allergic triggers and reducing the swelling in my body which made the Dercums condition worse. At one time for almost three years, I needed a scooter to get around and could not stand for more than a few minutes at a time because of tumors pressing on my spine but with Dr. Herbst, I have learned ways of controlling the tumor growth and getting my lymphatic system working better to clean out the toxins that had almost ruined my life. I am now able to do things I need to do as a performer, the things I love, like standing to perform in front of my audience.
I try to tell people my story whenever possible because although Dercums is rare, it may be so because so many people are underdiagnosed. Too many people, women especially, are written off as noncompliant patients or gluttons or lazy and that is why the doctors think they cannot lose the weight they have gained.
I am very lucky, I have found my way to the greatest doctors in their fields to find relief, but there are so many more people out there who need to find help and advocates to fight for them.
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