eNews Online - March 1999 Edition

eNews Online
March 1999 Edition


This Lymphedema eNews is being generated through your request from our website.



Lymphedema Survey

Sammuella Pry overcame lymphedema through dedication and hard work and is now completing a degree as a social worker at UC Santa Cruz. She is working on a Capstone project and hopes to bring increased understanding of lymphedema to the medical community. As someone who has suffered from lymphedema, her goal is to bring her special understanding of lymphedema together with her training in social work to further the understanding of the problems faced by people with lymphedema. The specific aim of her projec t is to obtain an understanding of how lymphedema affected your life and how you learn to cope with lymphedema. If you are interested in participating in her survey, please review it by clicking the following link. I think answering the questions can be of great benefit in several ways. Completing this survey will assist Sammi in the pursuit of her degree, but I think it will provide others, including physicians, with vital insights into the problem of lymphedema.

Sincerely,

Tony Reid MD Ph.D



Case of the Month
My Lymphedema Miracles
By
Blanche Pepitone

I have been given two miracles in my life. I did not look for them nor did I expect them. I did not even know I wanted them until they happened.

I am 33 years old and have congenital Lymphedema of both legs, which manifested at 18 months of age. I have had eight surgeries starting at age 3 and the last at age 26. I have also been to a myriad of quacks and "snake oil" salesmen to try anything to reduce my legs. I had gotten to the point where I just accepted what I had and was content to live my life the way it was.

In 1992, I got my first miracle. A friend said he saw a local news doctor speaking about lymphedema. He gave me a phone number. I called and subsequently received three weeks of therapy. I lost 12 pounds and numerous inches. For example, my knee measured 29 inches when treatment began, and was down to 19 inches when I had completed the therapy. I didnít know how uncomfortable I had been until I got comfortable. I was now able to move with more ease. I began to feel better and had more energy, best of all, I was now able to kneel in church without pain in my knees. I spent the next 6 years trying to maintain my results. I bandaged every day, did my exercises, and wore my garments. I would get up at 5 a.m., take a shower, role my bandages and then wrap. All this had to be completed by 7 a.m. because I had to get my children ready for school. I would then go about my day. I ould only wear my garments two days in a row if I was sure I could wrap at least 2 days before and three days after. There were certain ac tivities that could not be done wrapped, so planning any outings was tedious.

Then came miracle number two. Through the encouragement of my therapist, I was convinced to attend the National Lymphedema Network conference in September 1998. It was there I saw the ReidSleeve. I asked numerous questions, observed other patients, and even tried one on. I met Dr. Reid and he explained to me the technology behind the ReidSleeve. Ever the skeptic, I did not believe him and I told him so, however, I decided that it was worth a try and my insurance covered 80% of the cost. The ReidSleeves (on e for each leg) arrived in early December. I was hoping that if I used the sleeves every night, I might be able to wear my daytime garments during the day and only have to wrap every other day. I used the ReidSleeves the first night and wrapped the next day, then wore my daytime garment on the second day. This went on for about a week and a half. I was getting good results and was happy with the fact that I didnít have to wrap every day anymore.

My second miracle came to fruition. I was still planning on wrapping, but the second morning I woke up late (first time ever!), so I wore my pantyhose. I had a busy day planned and could not wrap after taking my children to school. I had plans for the next two days and knew I was not going to be able to wrap. I prayed that it would be all right. That was December 23, 1998. I have not put a bandage on since. Not only that but I have been seeing improvement in my legs and abdomen that 6 years of bandaging co uld not accomplish. It is truly unbelievable. I have a new life and can make spur of the moment plans without worry. I can take vacations and go swimming with my children instead of just watching them have all the fun.

I will not say that this therapy nor any specific therapy is the answer for all lymphedema patients. Everyone is different and their condition should be properly evaluated and treatment recommended that is best for them.

I do believe that everyone deserves a miracle, I have received two and am grateful for them.