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A letter to the NIH from A.B., Illinois

Dear Dr. Collins,

My son is 45. A father, husband, and an important part of the art and humanities world in Chicago.

He developed lymphedema possibly from a fall that infected his leg about ten years ago. He carried on his healthy life until 2 years ago when one leg began to swell and then the other swelled.

Less than a year ago, his stomach area (pannus) began to swell. It is now debilitating. He and his wife have researched and contacted doctor after doctor all over the U.S. who have refused help because his BMI is over 40.

Not one doctor has offered to even see him, let alone make an appointment to see and talk with him so that he can make a plan. His basic primary doctors know nothing about lymphedema.

He has done and continues to do all of the work at a research hospital in Chicago - drainage massage, pumps, compression stockings, etc. with no change and continued swelling. His physical movement is very limited since his pannus is so swollen. Due to his limited movement, he developed blood clots that moved into his lungs; he had a pulmonary embolism that almost suffocated him a few weeks ago. He landed in the ICU at a prestigious research hospital in Chicago and stayed in the hospital for over two weeks. He is now on blood thinners and oxygen as needed. But even in this highly regarded research hospital, he was told that there was no help for his lymphedema.

Through his own research, he needs surgery to debulk his pannus and possibly his legs. He has begun to lose weight, but time is of the essence. The strain to his body from the lymphedema is beginning to take its toll.

Why is this happening? Why are there not enough doctors who know about lymphedema, how to treat it, and offering help to these patients who are suffering so?

You have heard from plenty of people....we need answers!  

A. B., Illinois