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How HSS Changed My Life

I was diagnosed with lupus nearly 20 years ago. Fortunately, lupus only attacked my skin, so the doctor at the time said that I didn’t need to take medicine because the side effects of taking medicine are far greater than those of not taking medicine. This state has continued until the last 5 years or so. I have suffered from an increasingly bad migraine headache. I have seen a number of Western and Chinese doctors. In addition, I have other illnesses. I tried many different treatments and could not find a solution. The costs of various examinations was very expensive, it added to the financial pressure. Every time I saw a specialist, I would usually see him/her once as I would avoid the expensive consultation fees of follow-up visits. I ended up making all kinds of self-evaluation/medication on my own, but to no avail. Persistent symptoms of low-grade fever, joint pains, and severe hair loss and heart palpitations began to appear two years ago. I felt stressed about my condition which was getting serious and unpredictable - sometimes it seemed better but other times worse. I was worried about the high medical costs in the United States and not being able to find the right doctor. I felt that my mental stress was making my lupus worse.

So I turned to the internet trying to search for information. I discovered LANtern®(Lupus Asian Network) at HSS by accident. At that time, I just wanted help for recommendation of a good rheumatologist. Eliza Ngan-Dittgen, LANtern Program Supervisor, responded to me quickly and called to chat. She suggested several Asian doctors who speak my language and are highly regarded. During the calls, Eliza learned that I did not have medical insurance in the United States, she offered to help me to find solutions without giving me any pressure. In Asia, people generally feel uncomfortable accepting financial assistance. It was difficult to clearly describe how to feel at the time. In fact, this disease bothers me a lot. For years, I have looked healthy and normal, but I am often in indescribable fatigue. I have to be strong and work to support my family. Because of the financial burden, I have been trying to ignore my health although I am aware that the consequences can be very serious. I believe this kind of pressure has been hiding in my subconscious mind. When certain symptoms appeared, I was very scared but felt helpless to solve it. So when Eliza told me that she would try to help me to resolve the financial issues, I suddenly felt like someone had lifted a heavy load off my shoulders and told me, ”you can take a good rest now”. Yes, this was how I felt. I had not even seen the doctor for my illness, but I already felt hopeful. Eliza reached out to Randy Rodriguez, Voices Medicaid Education Program Supervisor, who worked collaboratively with HSS Financial Assistance Program (Stacy Hamilton) to expedite my application. They have solved the biggest crisis in my life, I am so relieved. I can finally treat my lupus without worries and distractions! If I am not healthy, my life and my family will have nothing. I am grateful to HSS for helping me to regain confidence in life without losing dignity.

I would like to thank Eliza, Dr. Weijia Yuan, a HSS rheumatology specialist, Randy and Stacy. Eliza especially communicated with Dr. Yuan about my situation; Dr. Yuan immediately stated that even without financial assistance, she could waive the consultation fee. I am very grateful to Dr. Yuan’s kindness; this is a noble quality. After meeting with Dr. Yuan, I have full confidence in her. Her experience, skills and care for patients empower me; I no longer feel helpless and afraid, even when I saw the poor results of my lab reports.

I hope that more patients suffering from lupus will be as lucky as me and be able to get the help they need. There is warmth in this world, I met angels at HSS who bring hope and strength to patients like me.

- Connie

"The biggest challenge of lupus is to admit that I have this disease and to maintain a relaxed attitude. The most difficult about lupus is feeling tired all the time. To combat the tiredness, I will stay at home and take naps, or sit and listen to music and relax. It’s hard to take breaks at work. The only thing I can do is to slow down the pace of work. Even though I’m tired constantly, I still keep up with the habits of jogging every day, visiting the gym twice a week and a normal life with relatives and friends.

Relatives and friends are an important factor in helping me face lupus and overcome psychological obstacles. They are the people who inspire me and give me hope to live when I want to isolate myself. While I am trying to get better and continue my normal life, it is important to maintain a positive attitude. In order to maintain a positive attitude, I maintain a normal and healthy lifestyle through continuous exercise and a good diet. I keep telling myself that although I have lupus, it does not define me because I am in control of it, not the other way round.

LANtern®(Lupus Asian Network) helped me connect with peer health educators and other patients with lupus to share our experience and discuss our concerns. These shared experiences bring us hope, comfort and encouragement, making us stronger and not feeling lonely and helpless. I remember that Karen Ng was the first peer health educator who contacted me when I was diagnosed with lupus. She provided me with the knowledge of lupus and gave me hope that everything would get better, and then I really got better. Until now, I am still very grateful to her for the encouragement she gave me at that time! "

-Anonymous (male)

"I am a full time mom of one child. My lupus started ten years ago right after my son was born. My biggest challenge with lupus is my joint pain. When it flares up, the pain in my back, elbows, and hands makes it very difficult for me to do house work, much less care for my baby. I was clearly frustrated. Thanks to my doctor, under her care, my pain improved remarkably and is manageable in general. Today, my son is big and strong and is able to help around the house. My family always gives me the love and support that I need all along. I am still a lupus patient but I am happy."

"With this chronic disease, it is important to communicate with your rheumatologist on a regular basis in order to get the proper treatment. I know that when my lupus is in remission, I can live a normal life just like everyone else. That said, I will still listen carefully to my body – know when to slow down, get rest, and work wisely."

"LANtern helps me understand a great deal about lupus. The knowledge I gained over the years has allayed most of my fear arising from this illness. I understand how it happens, what can be done, and what not to do. At LANtern, I have the opportunity to “vent out” to my peers and it often gives me a peace of mind afterwards. It is comforting to know that I am not alone in this journey. As a group, we can make our voice heard. We hope that an increased public awareness will lead to greater funding and research efforts towards a cure for this disease."

-Jenny L.

"It all started with a rash on my face that was shaped like a butterfly back in May, 2003. My mom took me to her general doctor and the doctor told me it was mere acne and not to worry about it. However, for the six months that followed; I experienced hair loss, fever and fatigue. On the other hand, my dermatologist was trying to figure out my acne problem by prescribing different kinds of antibiotics. Nothing worked and I was feeling horrible day after day. The truth finally came on the day when I was referred to an experienced Rheumatologist at Hospital for Special Surgery. Numerous lab tests later, I was swiftly diagnosed with lupus and was put on medication right away. No wonder lupus is nicknamed: “The great imitator” – which features non-specific symptoms and may be confused with a number of other diseases. While it could be a relief that my six-month ordeal came to a conclusion at long last, it was also a shock as I was not at all aware of this illness at the time. 

I eventually came to terms with my life with lupus which, in turn, gradually descended into remission. As the years ensued, I was basically medicine-free and was living an active life style marked by one high point event after the other - running the New York Marathon in 2006, getting married in 2007 and having a baby in 2009 – to name a few.

The fact is, stress and lupus do not go together. Not surprisingly, it was during my pregnancy that my lupus flared up, for it had obviously generated considerable amount of stress to my body and mind. Nonetheless, the good news is my son was born healthy months later and I am slowly getting better with the help of medical treatment as well. My son is truly a gift and he brings us pride and joy. In retrospect, I feel extremely fortunate to have the support and love from everyone in my family who helped (still do!) me through the difficult times.

When I first came in contact with LANtern, its comprehensive resources provided me with everything I wanted to know about lupus. My experience as a Peer Health Educator for the program has also been invaluable. While I am reaching out to other patients, I am learning how lupus can impact people’s life in so many different ways. I appreciate every opportunity to speak with our callers as it helps me understand that each person has different concerns and different ways to deal with lupus. It is consoling to know that I am not alone in the journey with lupus and empowering to be able to educate others about this illness or answer some of their concerns."

-Vicki, pictured with her son

"I was originally from China and went to medical school in China. After graduating from medical school, I got married and gave birth to a son. During my medical studies and practice, I started to notice annoying tiredness and didn't care about it at first. I thought it was from the work pressure of being a medical worker and managing my career and family. However, the symptoms were getting worse and worse. In addition to getting tired easily, the knees and finger joints also started to ache. At the end of the day, my ankles got swollen.  When I got up in the morning, my eyelids were swollen. At that time, the doctor diagnosed that I had nephritis and started treatment. I was feeling doubtful; nephritis should not be so serious that it affected my body functions. My doctor suspected that I had lupus but undiagnosed, because all test indicators were normal except for urine tests.

My family and I immigrated to the United States a few years later. As soon as I came to this country, my life changed in a completely new cultural and language environment. Soon my symptoms worsened. Fatigue and joint pain became worse. I also started to have fever, facial rash, dry mouth, shortness of breath, anemia, swelling in legs and eyelids became more obvious.  Almost every joint was stiff in the morning.  After a series of tests, I was diagnosed with lupus. I think it was the stress that had affected my health.

The biggest challenge facing lupus is to endure chronic fatigue and not sure when another symptom or inflammation will creep into my life. After I was diagnosed with lupus, it took a long time for me to adjust including my mood.  Living with lupus, these negative emotions still appear from time to time. I must put aside my dream career because my health condition does not allow it.

However, I still use a positive attitude to fight against the limitations and difficulties in life. I began to learn to have fun from the little things in life, such as finding simple pleasure in my long commute to work, volunteering in LANtern®’s activities, and helping others as much as I can. 

The person who has provided the most help and support in my life is my husband. He has no complaints. No matter how big or small things are, he is my strongest pillar. For example, when I go out to work, he will cook and do housework. Even though he works hard all day, he is still happy to help with housework. I also learned not to put too much pressure on myself, and to listen to my body. I learned not to waste precious time in regrets. Although I didn’t achieve my dream of being a doctor, I have got my family members whom I am proud of.

Through LANtern®, I got to know many patients with lupus. I used to feel very lonely because I didn't want others to know that I have lupus. Now I know that I am not alone, and that I can have a spiritual communication with other people who understand my feelings. Through the participation in LANtern’s activities and volunteering, I also have the great opportunity to learn more about lupus. "

- Anonymous Female

In 1981, my 7-year-old daughter Cindy was very ill. She had a high fever, nausea and vomiting. Her urine was pink. We were very worried about her and didn’t know what happened. My husband and I took her there. She saw her pediatric physician and was admitted to a local hospital. The doctor found a butterfly-shaped rash on her face. Her kidneys were not functioning normally. Cindy did a series of tests and saw many doctors. After two weeks, she was transferred to another hospital. At the Milton St. Hersey Medical Center in Pennsylvania, the doctors conducted more tests on Cindy. I accompanied her every night. One night, I even heard the fire alarm go off and I was worried about the hospital how to remove everyone out of the hospital, especially Cindy, because she was very weak. Fortunately, we did not need to evacuate. The doctor took her into the operating room and removed a small piece of kidney for diagnosis. On the day our doctor informed me and my husband of Cindy’s diagnosis. It changed our lives with Cindy forever. She has lupus, which we have never heard of.

Because Cindy's lupus affected her kidneys, she had to take a high-dose steroid medicine called Prednisone. The drug made her hungry easily and increased her appetite. Her face became like a full moon face, round and swollen. Despite these pains, Cindy never complained. I remember when the nurse couldn't get blood from her arm, she never cried. She also took another medicine called Imuran. However, she still did not get better. Cindy was very tired when she came home from school and had to take a short nap to regain some energy. She was pale, anemic, and needed a blood transfusion. In 1985, the grace of God fell on her, and a friend of mine recommended her to the National Institutes of Health (NIH).

At the NIH, Cindy received an experimental drug called cyclophosphamide (Cytoxan), which was injected intravenously. We met a very good doctor who treated Cindy like his daughter. Fortunately, we only needed to drive 2 hours each trip to the NIH for treatment. I always stayed by Cindy's side because Cyclophosphamide made her sick and vomit at any time. The week after the infusion, she would feel very tired. Cyclophosphamide also caused hair loss. I found a lot of hair on her pillow, bathroom and clothes. Even when I stroked her hair, several strands would fall off. However, she never complained. Over the years, Cindy had done several kidney biopsies. Finally, after seven years of medication, her doctor decided to stop the intravenous treatment and let her start taking a drug called Lisinopril to try to reduce the amount of protein excreted in the urine.

With these treatments controlling her condition, Cindy graduated from high school with the best grades. Then, she entered Yale University, her first choice. After that, she did some research on lupus and gave a keynote speech in the community. Then, she entered the Boston University Graduate School and got a double master's degree. However, she did not give up her truest dream, which was to become a doctor and help others, just like her doctor did for her. Cindy graduated with a degree in osteopathic medicine from the University of New England College of Osteopathic Medicine (UNECOM). Cindy studied Asian lupus during medical school and discovered an organization called LANtern®(Lupus Asian Network). She joined this lupus patient support program voluntarily and became a member of their Advisory Board Committee. Cindy is still a current Advisory Board member of LANtern®.

After completing her medical school, she completed a residency in internal medicine in New Jersey. In the second year of the internship, she began to experience unstoppable nose bleeding, and the blood would still flow out of her mouth. She has immune thrombocytopenic purpura (ITP), or platelet deficiency. She took different drugs, such as steroids, and intravenous drugs such as Rituxan and WinRho. After caring for patients for 24 hours as an intern, she would drive to the infusion center for treatment. Cindy hadn't been so seriously ill for a long time. When her condition worsened, she eventually went to the emergency room in the middle of the night due to high fever and bleeding. She was in the hospital one night and she looked very pale. I kept looking around on the hospital floor, and thank God, her doctor was on the same floor! He sent her to the intensive care unit. A few days later, the hospital let her go home. Soon after, she had to return to the hospital because of ITP. This time, she had to undergo surgery to remove the spleen to improve the condition of low platelets.

Since she went in and out of the hospital twice, and underwent surgery, she had to temporarily stop her internship. Cindy decided to present her case for morning report and teach others about lupus and ITP. At the end of that year, the hospital awarded her the Best Case Publication Award. When she finished her internship, I was very proud of her. She then became an infectious disease researcher. Now, she is a specialist in infectious diseases. I am lucky and proud to have my daughter, Cindy. Even though she was diagnosed with lupus in 1981, she continues to live and fight hard. I hope that if you have lupus, you will learn to overcome it.

-Diana S. Meng