Hi. I am Alyssa Meisel, a 23 year-old college student at Messiah University. The only thing that makes me different than most other young ladies is a disease called methylmalonic acidemia or MMA, for short. I was fortunate to be diagnosed with MMA (Mut 0) before I was born.
As a result, my treatment was directed by the terrific metabolic team from the Children's Hospital of Philadelphia (CHoP) immediately after my birth in May 1998 at the University of Penn Hospital, where my Mom's labor was induced. After being transferred to CHoP that first morning, I spent 2 weeks in the NICU until the doctors could assess my progress and develop a diet that was appropriate for me.
According to my metabolic physician for the first 18 years of my life, Dr. Paige Kaplan, I was the first MMA patient at CHoP to be treated from birth based on a prenatal diagnosis of MMA. The doctors checked me for this devastating disorder because I have a brother, Blake, who died a year earlier from the disease at the age of 8 days old.
Unfortunately, despite supplemental newborn screening, he was already in a coma and suffered serious brain damage (from acidosis) before the results of the screening were available. Blake is in Heaven and is my Guardian Angel. Because of him, I have a great chance at life.
I have another older brother, Clayton, who is my best friend. He does not have MMA, although he may be a carrier. I am very blessed to have such a caring and fun loving brother to do things with.
While I am able to eat by mouth, I get most of my nutrition from a G/J tube. I have had my g-tube since I was 7 months old after refusing to eat my formula for several months. I understand that my feeding tube is a God send and has saved my life. Before being able to swallow medications, the feeding tube enabled me to take distasteful medicines without swallowing. It is also useful to administer feeds when I don't want to eat and to prevent me from fasting, especially overnight!
I am on a low protein diet that is comprised mostly of Nutren 1.0 and two medical foods (Duocal and Propimex 2). Because of my protein restrictions, I do not eat meat, legumes or much dairy. My list of favorite foods is limited, but includes brussel sprouts, asparagus, brocolli, carrots, sugar snap peas, spaghetti squash, dill pickles, salt & pepper potato chips, popcorn and french fries (McDonald's are my favorite). Most of the time, I would rather cook than eat!
Over the years, I have been diagnosed with gastrosophogeal reflux and cyclic vomiting. Medications have helped me control these issues. The J tube has enabled me to manage the episodes of vomiting that do occur.
I have been hospitalized a number of times through my life due to flu bugs that would not allow me to keep my special formula down. This happened more before I turned one year old. Between the ages of 6 and 8, I had numerous hospitalizations as a result of cyclic vomiting and bouts of acute pancreatitis. This was very painful.
Because of the frequent hospitalizations related to pancreatitis, I had a mediport placed to allow easier access to my veins during emergencies. However, after over 5 years with very limited use of the mediport, we decided to have it removed in early 2013. The doctors also changed my G-tube to a G-J tube that allowed food to by-pass my stomach when vomiting became severe. This allows for me to be cared for at home often instead of going to the hospital. At those times I am on continuous 24/7 feeds.
Like many afflicted with MMA, my kidneys have suffered damage from the constantly high levels of acid in my system. Several years ago, I entered into end stage renal disease and was placed on the national kidney donor registry. As you may know, there are MANY people waiting for kidney donations. Because I was an adult when I suffered end stage renal disease, my odds of getting a kidney were slim. In 2017, my mom saved my life by becoming my living kidney donor. Donors save lives!
Because of the MMA and the kidney transplant, I have to take a number of medications each day. These include prednisone, mycophenolate, tacrolimus, Vit E, and Ubiquinol. I am also on a supplement of carnitine.
Putting my disease aside, I have lots of family and friends and a terrific furry sister, Maggie
In the past, I have enjoyed horseback riding (which I hope to start riding again), softball, high school theater productions and camping. Playing sports (especially soccer) was not generally possible as it caused significant exercise induced vomiting.
I am currently a sophomore in college majoring in nutrition with a minor in Children and Youth Services.
My goal is to use the knowledge gained from managing my complex condition, the dietary implications of MMA as well as my degree to help other families, especially children, with concerns related to feeding and nutrition.
When I'm not concentrating on my studies, I enjoy Penn State football, reading, music and hanging out with family and friends. Currently I am content to play board games and cards and limited outside activities like corn hole and walking the dog.
I am truly blessed to participate in the research study being conducted at NIH. I am very hopeful that Dr. Venditti and his team will find a cure for me and others like me very soon. Also, I am blessed by the many Angels (family, friends and even strangers) that help with the fundraising for research.
My Mom and Dad would like to add a few notes now, so I must go.
Thanks for taking an interest in my story!
From Mom and Dad:
Alyssa is truly a blessing in our lives. Through the loss of our son to MMA, we know how devastating the consequences of this disease can be. While caring for a child with MMA has extremely stressful moments, we try to put those times behind us as quickly as possible and attempt to lead "normal" lives. God has a purpose in all that he does. We just pray that he will guide us in fulfilling his purpose for us.If any one would like to contact us, please do not hesitate to call (717) 582-2195 or email us at [email protected] We would be happy to answer your questions or just talk.
Bonnie and Denny Meisel