My name is Mary Linda Chum, 32, born in Sacramento, CA, currently residing in Peabody, MA. I am the 2nd oldest out of 4. I have 1 older sister and 2 younger brothers.
One morning at the age of about 8 or 9 my mom noticed that there was some puffiness in my face. She immediately brought me to the hospital where we later found out that I was being diagnosed with a kidney disease called, Nephrotic Syndrome. I was too young to remember everything, but the most significant memory I have growing up was that I had a much different childhood compared to my siblings, such as missing many school days, weight-gained due to the high dose of steroids, which led to bullying. With this kidney disease, I was also on a low –salt diet, which was very hard for me because the steroids were making me very hungry and everyone else got to eat “good food”. There were definitely times when I couldn’t help myself but to sneak in food to eat.
Several years later, the doctor did a biopsy and determined I had FSGS (Focal segmental glomerulosclerosis). Over the years, I have been on prednisone, cimetidine, lipitor, lisinopril, baby aspirin, and Neoral (cyclosporine). My childhood and teenage years consisted of constant visits and long-term stays in the hospital due to relapses. A small percentage of my kidney has been damaged as a result due to the long-term medications I have been taking for the past 10+ years.
Not too long ago, I was fortunate enough to have a great Nephrologist become my doctor, Dr. Anna Greka. She is one amazing doctor and never stops until she has done her best. I never really got to thank her until today! With her long hours of research, Dr. Greka has changed my life tremendously! From taking 5-6 different medications daily to monthly infusions, it has been a life-changing experience. My prior doctors before Dr. Greka, will tell you how bad I was when it came to taking my medications, which was actually causing the relapses. It got to the point where they would actually need to take a blood test to make sure I was taking the medications and informed nurses that my prescriptions could no longer be refilled.
I was one of the few patients that were lucky enough to be selected in this trial. Dr. Greka mentioned that she wanted to try something new and mentioned that I wouldn’t have to take all the other medications if it worked. Of course, I was beyond excited to know that I didn’t have to continue taking so many different medications.
Orencia (Abatacept) is known to treat the symptoms of rheumatoid arthritis and to slow the progression of joint damage. Little did I know, it also treated my kidney for 6+ years with no side effects or complications. Again thank you Dr. Greka for all of your hard work and dedication.