Dear Dr. Collins:
It was with great pleasure that I read that the NIH has been directed to establish a National Commission on Lymphatic Diseases. This is long, long over-due. Those of us who suffer from lymphedema have felt so greatly ignored by the research community.
One year after cancer surgery in 2007, I developed lymphedema in my right leg. I had no idea what lymphedema was. My oncologist never warned me about its possibility following the removal of 22 lymph nodes during this surgery. My right leg is so much larger than my left leg, that it shocks anyone who sees it. I have endured comments, such as, “Oh my God, that’s a shame,” gasps, and, the best ever, “Well, at least you still have your leg.”
These individuals do not realize the psychological and physical damage lymphedema leaves on its victims. I no longer wear shorts, a bathing suit, a dress, or any outfit that would show my right leg. I have no personal relationships because I am so embarrassed about the appearance of my leg. I have tried everything possible, tons of lymphatic drainage therapy, wrapping the limb, compression stockings, pumps, and exercise. I have undergone lymph node transplant surgery and a lymphovenous anastomosis bypass procedure, both of which did not work. Any treatment out there now offers only temporary relief. As soon as the wrapping and therapy ends, the swelling returns. There is no medication or device that can stimulate the lymph nodes in my leg to do their job in clearing my leg of the toxins and fat that have now accumulated there.
Please help the millions of us straddled with this physically and mentally debilitating condition. We need research into permanent solutions.
Thanks so much for your time in reading this email.
A response from NIH:
August 18, 2021
Thank you for taking the time to write to Dr. Francis Collins, director of the National Institutes of Health (NIH), to share your experience with lymphedema and your concerns about lymphatic research. Your inquiry was forwarded to the NIH’s National Heart, Lung, and Blood Institute (NHLBI) Center for Health Information for response.
The NIH is strongly committed to advancing lymphatic research. The lymphatic system plays a significant role in a broad spectrum of diseases and conditions, including infectious diseases, inflammation, cancer, obesity, and cardiovascular disease. For this reason, the NIH, which includes 27 Institutes, Centers, and Offices, has an NIH-wide committee to coordinate research on the many diseases and conditions that involve the lymphatic system, including chronic diseases such as lymphedema and lipedema.
While lymphatics research exists across several of the Institutes across the NIH, the NHLBI supports research investigating the development of the lymphatic system; causes and risk factors for congenital lymphatic diseases and lymphedema; and the role of the lymphatic system in cardiovascular and pulmonary diseases and in lung transplant outcomes.
For example, you may be interested in reading the research feature, Advances and challenges in treating lymphedema: A Q and A with Dhruv Singhal, M.D., a lymphatic surgeon and NHLBI-funded investigator who is working toward new interventions for lymphatic diseases. This is just one of many examples of the types of research we are supporting at the NIH. In addition, to ensure that interested scientists, clinicians, and patients will be able to explore the NIH’s full portfolio in lymphatic research, the NIH is also developing a mechanism to analyze and share NIH investments in lymphatics research through the NIH's Research, Condition, and Disease Categories (RCDC) system. This effort will lead to public-facing RCDC categories that will allow interested parties to view a list of funded lymphatic research projects by fiscal year, and to access the details of each project, including published results and patents, through the NIH Research Portfolio Online Reporting Tool (RePORT). This new RCDC category is expected to be operational in 2022.
If you are interested in learning more about research on lymphatic diseases, you may want to register for the November 4, 2021, virtual scientific symposium, cosponsored by the NHLBI, that will review our current understanding of the lymphatic system and discuss how we can use this information to better diagnose, treat, and prevent diseases such as lymphedema. You are welcome to register and listen to the livestream from 9:30 a.m. to 4:00 p.m. ET.
There is still much to be learned about basic lymphatic biology, including how the lymphatic system develops, how and why lymphatic vessels become dysfunctional, and how the system interacts with other organs to cause lymphedema and other conditions. With this understanding will come new diagnostics and treatments.
Thank you again for reaching out and sharing your concerns. We appreciate your interest in the research that the NIH supports.
NHLBI Center for Health Information
P.O. Box 30105
Bethesda, MD 20824
Toll-free: 1-877-NHLBI4U (1-877-645-2448)