"In 1981, when my daughter Cindy was seven years old, she became very ill. She had high fevers, nausea, and vomiting. Her urine turned pink. We were very worried about her and did not know what was happening. My husband and I took her to the pediatrician, and they said she had to go to the hospital. The doctors found a rash shaped like a butterfly on her face. Her kidney function was not normal. Cindy went through all these tests and saw many doctors before they transferred her to another hospital two weeks later. At Milton S. Hershey Medical Center in Pennsylvania, Cindy had more tests. Every night, I stayed with her. One evening, there was even a fire alarm, and I worried how they would get everyone out and especially Cindy, since she was very weak. Luckily, we did not have to evacuate. The doctors took her to surgery to get a piece of her kidney to make a diagnosis. The day that doctors told my husband and me the diagnosis changed our lives and Cindy’s forever. She had lupus…a word we had never heard before.
Because her lupus involved her kidneys, Cindy had to take very high doses of steroids called prednisone. This made her feel hungry and eat a lot of food. Her face became very round and puffy with a moon face. Through all of this, Cindy never complained. I remember she never cried when the nurses could not draw blood from her arms. She also had to take another medication called imuran. Still, she did not really feel better. Cindy came home very tired after school and had to take naps to get some energy back. She was pale, got anemic, and needed a blood transfusion. At that time in 1985, God blessed her because I had a friend who recommended that she go to the National Institutes of Health (NIH).
At NIH, Cindy received experimental medicine in a research trial to get an intravenous (IV) medication called cytoxan. We met a very good doctor, who seemed to treat her like his own daughter. Luckily, we only had to drive two hours each way to NIH to get the treatment. I always stayed with Cindy because the cytoxan made her nauseous, and vomiting could occur at any second. After the infusions were over for at least the next week or so, she would be very tired. The cytoxan also caused her hair to fall out, and I would find her hair on her pillow and in the shower and on her clothes. Even if I touched her hair, a few strands would come out. Again, she never complained. Over these years, Cindy had several more kidney biopsies. Ultimately, her doctor decided to stop the IV treatments after seven years of the medication, and put her on a medication called lisinopril to try to cut back on the amount of protein she was losing in the urine.
Through all of this, Cindy was able to become the valedictorian of her high school. She then went to her first choice of colleges, Yale. After this, she did some lupus research and talked about lupus in the community. Then, she went to Boston University for graduate school and two master’s degrees. Still, she never gave up on her true dream to become a doctor to help other people, just like her doctors had helped her. Cindy graduated with a medical degree of D.O. from the University of England College of Osteopathic Medicine (UNECOM). While she was a medical student, Cindy was doing research on lupus in Asians and found a group called the Lupus Asian Network (LANtern). She volunteered with them and then became a member of their Advisory Board. Cindy is still an active advisor for LANtern.
After medical school, she did her residency in internal medicine in New Jersey. During her second year, she started to have nosebleeds that she could not stop, and blood would come out of her mouth. She had ITP (idiopathic thrombocytopenic purpura), or a low platelet count. She was on different medications, like steroids and IV injections of medicines like WinRho and rituxan. After working for 24 hours straight taking care of patients, she would drive to an infusion center to get her treatment. Cindy was not sick like this for a long time. It got so bad that she had to go to the emergency room in the middle of the night because of high fevers and bleeding. One night in the hospital, she did not look good. I looked around the hospital floor, and thank God, her doctor was on the same floor! He sent her to the intensive care unit. A couple of days later, they discharged her. Not too long after that, she had to go back into the hospital for the ITP, and this time, she had surgery to take out her spleen to make the platelets better.
Because she was in the hospital two times and even had surgery, she had to take time off from her residency. Cindy decided to make a presentation about her case so she could teach other people about lupus and ITP. At the end of the year, the hospital gave her an award for the best presentation. I was very proud of her when she finished her residency. Then, she did a fellowship in infectious diseases. Today, she is a specialist in infectious diseases with a private practice. She and her husband live in Cherry Hill, New Jersey.
I am lucky and proud to have a daughter like Cindy. Even though she was first diagnosed with lupus back in 1981, she was able to keep living her life. She is an inspiration to many people with lupus. I hope if you have lupus, you can learn to overcome it, too."
-Diana S. Meng