The story of Suzi
I go under the name Suzi More…my site is www.mysuzimore.com where almost 200 tracks of songs I have produced are located. Almost all of the music I have been videotaped performing is on You Tube and I usually list most of my various rare conditions. I want to try to bring awareness every day of my life. To me and many others, Rare Disease day happens 365 days a year for them.
I am in the USA and the picture I tried to send is not flattering, it was when I was at my highest weight from Dercums Disease, a disease that causes patients to have rapid weight gain in a very short time because of fatty tumor growth. These lipomas can grow varying from the size of peanuts to grapefruits and even larger. They are very painful in the beginning growth stages and they also press on nerves, infiltrate organs and muscles and in my case, bones. These fatty tumors (lipomas) also weigh 5 to 10 times heavier than normal fatty tumors and take 5 to 10 times longer to burn in the lab.
No matter how much pain I was enduring at the time, nothing was going to stop me from singing the Ave Maria at my son’s wedding.
My list of conditions: Dercums Disease, Madelungs Disease, Lipedema, Gout and a fatty infiltrated liver that is directly from Dercums tumors MCAD (Mast Cell Activation Disorder) Vitamin D3 and originally B12 deficiencies but within the last year, they discovered I had MTHFR which means I cannot absorb any B Vitamins and must take a special Methylated B Complex supplement because of this. I also have been given gamastan for years because of an IGg and IMg deficiencies but now am again fight AETNA to try to get back on it.
Thank you for your assistance. I just hope that I can help others know that trying to continue their work even in a less productive way has been a stimulus to me through these years. I am very thankful that I was able to find the best doctors in these fields to help me. I had the resources and the ability to find them as well as encouragement of my husband.