By Joe Roberts @jrobertsjourno
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Videographer / director: John-Paul Steele
Producer: Joe Roberts, Ruby Coote, James Thorne
Editor: Sonia Estal
Janice Greene, 53, has had Lymphedema all her life – a condition caused by blockage in the lymphatic system, resulting in lymph fluid collecting under the skin causing swelling.
But in recent years, the swelling in Janice’s right leg reached such a level, the leg weighed 150 pounds by itself, prompting an expert in Lymphedema to claim Janice as one of the most severe cases in the US he’s ever seen.
Janice, of Jackson, Georgia, said: “I can’t get into any low vehicles, any tiny vehicles. I can’t go to just any restaurant, they have to have chairs that sit low because I can’t sit in a booth.
“You can’t find clothes, you can’t find shoes, you don’t want to go to public places. I don’t go out in public a lot because I have a lot of people following me trying to take my picture.”
But since she recently started a different type of therapy, Janice’s swelling has reduced, and the former pharmacy technician has been feeling more optimistic.
“The last couple of years I have not thought I had a future,” she said. “I have kind of quit thinking that way. Now I feel like I have a future.”
Janice, whose two sisters also have Lymphedema, suffers with a form of the condition known as Primary Lymphedema, which means it’s genetic and there is currently no cure.
But the treatment she has undergone recently, known as Complex Decongestive Therapy, or CDT, involves massaging and bandaging the leg on a daily basis, and has resulted in a significant reduction in the swelling.
But Janice’s previous care has been inadequate, causing the leg swelling to develop into individual lobes made of hard fibrotic tissue and making treatment very difficult.
Husband, Ray, said: “Once we got to a point where she just gave up and said she didn’t want to be messed with, and so we stopped and for the next two years she ballooned up to the biggest point.
“She couldn’t drive, couldn’t walk around the house, couldn’t do anything, and we got to a point where she had fallen and hurt her back and she couldn’t get up off the floor.
“She laid on the floor for about six hours, so we had to do something.”
Following Janice’s fall, Ray began researching Lymphedema and discovered that if his wife didn’t get help to reduce the swelling, she could go through congestive heart failure.
“I did not want to see that happen,” Ray continued. “I started doing a lot of research, calling everywhere.”
During this time, the largest lobe on Janice’s leg grew to 69 inches around, and although she underwent surgery in the past, further procedures could not be carried out until the lobes were significantly reduced.
Luckily, Ray’s search for answers led Janice to meet Robin Bjork, founder of the International Lymphedema and Wound Training institute, who helped guide the couple towards the right therapy and custom garments to support Janice.
The CDT therapy that followed has reduced the main lobe on Janice’s leg from 69 inches to 46 inches, and she has now started the next phase of the treatment: Hivamat therapy.
Janice recently had her first session, which involves a machine that uses an electrostatic field to break down the tissue so the fluid can be more easily massaged.
Heidi Atkins, a physician assistant at the vein specialist where Janice had the therapy, said: “Janice has not had great treatment or care over the years, and the new treatment we are working on is actually helping tremendously.
“She is never going to get back down to her legs being equal, but she should continue to see less and less swelling in the legs.”
That reduction is already clearly visible. A 3D scan taken in June this year showed that overall, Janice had lost a massive 170 pounds of weight since August last year.
Meanwhile the main lobe on Janice’s leg has seen more than a 50% reduction or 13.2 gallons in volume. But there’s still work to be done.
As well as caring for Janice, Ray is an advocate for the Lymphedema Treatment Act, which if passed, would mandate insurance companies and Medicare to pay for the garments.
“In my opinion it doesn’t matter [how much it costs],” said Ray. “People like Janice are suffering, they are going through a lot of misery by not having this act pass.”
Now, Janice has been cleared for surgery on two of the lobes on her leg, and the couple are hoping to have the procedure done in September.
Janice added: “I just want a better way of life, I don’t want to just sit on the couch and wait. I felt like, before, I was at the end of my road. I felt like I was just sitting here and everybody was passing me by, so my quality of life is definitely changing.”
Raymond added: “I want to take her dancing one day. I am talking about just being able to hold her and slow dance.
“Over the past few weeks, I have seen a lot more of her smiling, not having that depressed feeling all the time. There’s hope there you know.
“When I see her smile, it just brings tears to my eyes because I know that she would do whatever it took for me if stuff ever happened. We have each other.”