Lymphedema Treatment For
Complex Regional Pain Syndrome (CRPS)

CRPS Patient Presentation
University of Virginia - School of Medicine

Lynn Clemons, CLT, MMP, LMT / Dr. Peter Amato
(UVA Pain Management)

West Ends Best - Magazine

2003 Issue

Four years ago, Lynn (Phillips) Clemons had hit the wall.  “It was ‘menopause and mad at the world’ Lynn, a vivacious brunette with a ready smile, now laughingly admits.  “I felt like I needed a new challenge, a shot in the arm.” The opportunity came when, while chatting with a friend, they found they both had an interest in massage therapy.  They enrolled in the American Institute of Massage, and Lynn continued her training at the Lerner Lymphedema Academy.  A year later she was a licensed therapist specializing in Manual Lymphatic Drainage (MLD), which reduces swelling in affected body parts.   She also founded her own business, “Equilibrium Therapy” in Richmond’s trendy West End.

Still, something was missing.  “I loved my work,” says Lynn, “but I felt there was something more I might be doing with my new skills to help people.”

The chance came while perusing the Net in February of 2003.  Always adventurous, Lynn, who a few years before had backpacked across Africa with her husband, came across something that caught her eye.  That “something” was an offer by the Sumba Foundation to have a licensed massage therapist train their therapists at the Nihiwatu Resort on Sumba Island, Indonesia.

The resort planned to capitalize on the beautiful surfing beaches at its doorstep, but Lynn had something else in mind.  “As part of my training I had worked with cancer patients undergoing chemotherapy, so I knew the effects of disease on the lymphatics, and the swelling it causes.  I also knew that these islands had Filariasis, a disease that can cause Elephantiasis and which in that area of the world is inadequately treated.  Why not use this offer as an opportunity to train the local health professionals in modern treatments to reduce the swelling?”  There was only one snafu: the owner of the resort wasn’t interested.

“I did a lot of research through the World Health Organization before contacting him, but all he wanted was someone to train his massage therapists.”  Still, he did want Lynn to fly over for three weeks of training.  If she went, would she have to give up the idea of Elephantiasis treatment?’

“Not on your life!”  she laughs.  “I had the trip, free food and lodging, and the island had a clinic.  I also knew that the Foundation had a mandate to help the clinic.  I hoped that I might be able to work something out!”

In May 2003 she left for a three-week training session on the island of Sumba, two hours by plane east of Bali.  The trip took 25 hours.  “Everyone was worried about SARS and about the then-recent bombing in Bali.  Me, I was more worried that this was just a dream, that I wouldn’t actually be able to accomplish anything.  But I had to give it a try.”

After a grueling trip Lynn arrived at Nihiwatu Resort, dead tired.  What was it like?  “Oh, my word!”  she laughs.  “It was Five-Star all the way, from the gourmet food to the surf crashing practically at your feet, to your own personal gecko.”  

Gecko?

“Yes, gecko!  They aren’t just in commercials!  One or two would be on the rafters above your room, catching any stray flies that might get in at night.  They didn’t bother you, but they sure were noisy! The buildings were gorgeous, very South Seas, and quite imaginative, with water running from bamboo pipes, billowing muslin curtains and sand floors in the outdoor dining room which merged with the beach and the surf.”

Lynn settled into her job of teaching the Sumbanese the art of massage therapy, working through a translator as they spoke very little English.  The work was fun and rewarding, but how to fulfill her bigger plan of helping the Filariasis victims on the island?  Help came from an unexpected source.

“The second week I was there, another group arrived, eight doctors and medical students from San Francisco who were members of the ‘American Medical Surfing Association’.”

Hmmm.  A bunch of “Surfin’ Doctor Dudes”.  Sounds interesting.

“But even better, they were part of a program that was pledged to help indigenous populations.  I thought I saw my chance.”

Lynn approached the group about the possibility of helping her establish a program of Manual Lymphatic Drainage to help the Elephantiasis sufferers on the island. 

How did it go?

“Not too good at first,” she admits.  “The MDs were not aware that Elephantiasis existed on the island and didn’t know much about the disease itself.  Some were worried that massage could push the Filaria in the wrong direction!  When I showed them with literature how Manual Lymphatic Drainage could give 100% results without surgery, they were amazed.  I’ve got to say, before long they were on my side.”

The second step was to meet with the Tribal Elders.

“That was an experience to remember.  The village was an hour from the resort, and the people live as they have for 100’s of years.  The houses are built on bamboo stilts six feet above the ground, and above them have incredibly high thatched roofs in which grain is stored.  Pigs, goats and dogs live under the houses, and are the vectors for the flies and mosquitoes which transmit Filariasis.  The people are warm and friendly, however, and very interested in improving their condition once they understand what to do.  You are supposed to take cigarettes as a gift to the Elders, but I couldn’t do that, so I took sugar instead!  They also expect you to chew beetle nuts with them.  I managed to tactfully hide it under my shoe.  Speaking of shoes, in Indonesia it is considered an insult to point the bottom of your foot at a person.  All discussions were in a seated position, on the floor of the chief’s hut, so I had to undergo all kinds of contortions to keep my feet from pointing at anyone! 

How were you received?

“Very well.  The language barrier was a bit of an issue, but the people are very responsive to any help at all. I am sure that as plans progress, they will become even more receptive to a program which can benefit them greatly. The Foundation has an agreement to upgrade the clinic and improve medical care, and the locals realize that.  On the way back I was able to see the existing clinic. With the teaching materials I can bring in, it will work perfectly!”

Now there remained only one more hurdle: permission from the owner of the resort to let her return, use some of his facilities, and allow funds from the Foundation to be directed to a program of teaching and securing supplies for MLD.

“That part was really remarkable.  The owner just happened to fly in to see how the resort was doing the following week!  He had not been responsive previously to helping the clinic set up MLD, but this time I was better prepared! The doctors were now behind me, and I knew the Sumbanese would be responsive.  I also had seen records from the clinic of an Elephantiasis patient who was not receiving adequate treatment.  I did a much better job of presenting my case, and this time he was agreeable!”

So, when do we start?

 “Right now, we are in the planning stages for me to return to the clinic as soon as possible to teach two nurses, local Sumbanese, how to perform Manual Lymphatic Drainage. In addition to MLD, I plan to cover diseases and contraindications, compression bandaging, wound care, and infection control.  There is no video system, so we will use charts, photos, and a lot of hands-on training in clinical wrapping. It will be just what the Sumbanese need!”

Talking with Lynn, one cannot help but be impressed by the effects of her vision and perseverance. What she has accomplished and hopes to accomplish is a fascinating story.  But the lady herself is incredibly modest about what she has done.

 “I just want to help these people,” she says. “There are so many reasons to return to Sumba – the beautiful beaches, the stunning scenery.  But the people, that’s the real reason. 

“It is a chance to make a difference.”

Just tell that to those Surfin’ Doctor Dudes! 

                                                                                                           Contributor- Dr. Mark F. Davy