Lupus is an autoimmune disease in which the body’s immune system attacks itself. The bodies of those who are affected by lupus produce rogue antibodies that attack the tissues of various organs. Lupus can affect ones skin, heart, lungs, joints, kidneys, and even the nervous system. There is no know cause of the Lupus, and there is no cure for it either. I am walking on May 17th to help the Lupus Foundation of America find a cure. Please take a minute and sponsor me for my Walk For Lupus. Let’s help the Lupus Foundation of America find a cure for this terrible disease. Donating through this site is completely safe and secure. You can donate as little as five dollars, every little bit counts. Thank you so much.


My personal story:

My name is Momo Berg-Munch. I began dancing ballet at age 2 in Japan. I was enrolled with Joffrey Ballet, Peridance, and eventually went on to perform with the New York City Ballet at Carnegie Hall. At the age of 11 I was diagnosed with Mixed Connective Tissue Disease - which is a combination of Lupus, Schleroderma, and Rheumatoid Arthritis. Throughout my teenage years, I suffered arthritis in all of my joints. I was told by my doctor not to take physical education with my classmates, and I was advised not to take part in any physical activities at all. I was told that my disease was “stable”, but I was put on a mild prednisone regimen during most of my adolescence. Prednisone, when taken for long periods of time can cause inflammation of the face and loss of appetite. I was 5’1, 89lbs, with a very round face. Many of my schoolmates picked on me and I was given the nickname “Snap-On-Parts” because I was so skinny everyone thought that if they touched me I my limbs would snap off.

When I was 17 years old, I had had enough of watching my classmates do many things I wished I could. I missed dancing. When the annual showcase tryouts came around, I auditioned for the SING! Hip Hop Dance Team, and made it. I was so happy to be dancing again and stayed with my high school SING! Hip Hop Dance Team until I graduated.

When I went to Syracuse University for College, I joined a hispanic hip hop, bachata, salsa and merengue dance troupe called RAICES Dance Troupe. I wanted to keep on dancing. It was always extremely cold in upstate New York and I had a lot of trouble dealing with the pain in my hands and feet from the arthritis. It was while I was at college that my condition worsened.

I began developing problems with my esophagus and my skin. I noticed that I had difficulty eating from time to time, and later discovered that my pyloric sphincter in my esophagus had lost its muscular contraction function. I also began developing large lesions that swelled up and were painfully tender to the touch, always associated with a fever and full body muscle aches, and would last for days at a time. What I was suffering from is called Palisaded Neutrophilic Granulomatous Dermatitis. Neutrophils are like our bodies’ fighter pilots, released to attack infections by engulfing and attacking infected cells in our bodies. In PNGD, our body overproduces these neutrophils and attacks itself in the skin. I was always able to deal with the pain of the arthritis (by the age of 20 I was quite used to having swollen joints for 9 years), but the PNGD made me feel like I was sick, suffering from a terrible chronic pain disorder. The muscle aches were terrible and debilitating. Dermatologists at NYU Hospital took biopsies and tested me over and over again. They gave me a prescription for Dapsone, which I still take for three months at a time, as well as a daily DHEA supplement to lower my hormone fluctuations each month. I take these pills on top of my already daily intake of Plaquinol and Tolmetin. However, the PNGD still kept coming back no matter what I took. I was determined to find a treatment for my PNGD. I refused to accept it.

A few years of dealing with outbreaks of tender and painful papules, fevers, and full body muscle aches went by. I started to notice that as long as I danced everyday and kept  working out at the gym at a constant and steady rate, my outbreaks became less and less frequent. I remembered that one of my biggest confusions in trying to pinpoint a stimulant to each outbreak was that sometimes I would get these flare-ups when taking a day off from the gym or from dance class, and sometimes I got a flare-up right after a dance class. Sometimes it happened after a day in the sun and sometimes it happened during the winter. I could never figure out what caused the PNGD. I realized, however, that the one thing that kept it all at bay was physically working out and keeping my body as fit and active as possible, all the time. I take dance classes two to three times a week, strength training two times a week. And I dance on my own, out of class in an empty studio two days a week. I usually allow myself one or two days within a week to rest, usually Sundays and Wednesdays. But I keep my schedule very routine and I am always as active as I can be. Everyone who knows that I have MCTD is surprised that I am able to be a dancer, and that I am able to perform and work out and lift weights and be as active as anyone else. There are two reasons for this. The first reason is that I decided to stop listening to all of my doctors who used to tell me to keep away from the gym. I am a dancer and I will dance.

The second reason is the more important one. I am extremely lucky to have such a mild case with only my joints, esophagus, and skin affected by Mixed Connective Tissue Disease. Many people out there have full blown Lupus whose organs are being attacked by their own immune system. For these people, the prognosis is not very good. That is why I am walking on May 17th. I am walking for those who are not as lucky as I have been.