A guest blog post by Linda Anne Kahn, CLT-LANA, CIDESCO, NCBTMB, CMT, HNC. Ms. Kahn is a lymphedema, lipedema, and Dercum’s therapist and president of Lymphatic Therapy Services of San Diego. She has stage one lipedema. 

I'm a lipedema therapist, so I treat all kinds of conditions. One reason I'm so passionate about treating patients with lipedema is that I have lipedema. I know all the struggles because I’ve had them.

When I was a teenager, it was the fashion to wear high heels with straps around the ankle. Not good for someone with lipedema! I’d look at other girls’ legs, and I'd think, "Oh my God, look at those ankles." 

I always wanted that, and my legs were just straight with no clear definition of ankles. I went through the same story that I hear from so many of my patients. 

I was constantly trying to lose weight. I starved, I tried every diet, and I tried counting calories. I was almost anorexic. Then I became a beauty therapist and massage therapist and began my quest for health. I still didn’t know what was wrong with me, but I attended a course on lymphatic drainage and aromatherapy and was fascinated. 

Then I moved to the United States and opened a small clinic. That’s when I flew to Salt Lake City to train with a woman from Finland. She was teaching Dr. Vodder’s manual lymph drainage and I became interested in the lymph system. I didn’t quite know why. 

I began training with my present instructor, Professor Wittlinger from the Dr. Vodder School International. When I was in Austria in 1992 graduating as a lipedema therapist, Professor Wittlinger said to me, “Look. You have lipedema.” 

“Well, I don’t look like the pictures you’ve been showing us,” I said. That was because I had stage one lipedema. 

It was very rare to diagnose lipedema at stage one in those days. Even today stage one patients are often not diagnosed. All my questions had finally been answered.

I set out on a journey to study nutrition. Before I had my diagnosis, I was already diligently eating well and avoiding junk food, white carbs, and sugar. I’d begun finding the right exercises for my body. Over the years, I identified which foods made me bloat, which foods made me put on five extra pounds overnight, and which foods created pain in my legs. I developed an eating program we now call the anti-inflammatory diet.

When I met Dr. Karen Herbst in San Diego, she shared the RAD diet she had created. This was similar to my program in that both are lifestyles, not diets. I think that’s why I never progressed from stage one. Lipedema does progress in stages, but it doesn’t have to. I am living proof of that!

Diet, Exercise, and Self-Care

When you're already in stage three, that's more challenging. But for stage one and stage two, we need to stop the progression to lipo-lymphedema. There are so many eating plans out there that I'm not going to say which one is best. They’re very specific to each person. 

Here are important options for lipedema patients: 

• Ketogenic lifestyle 
• Mediterranean diet
• Anti-inflammatory food plan
• Cut out processed foods
• Cut out packaged foods
• Avoid sugar
• Eliminate white carbs

Additionally, you have to get some form of daily exercise. You have to move. I try to see what works well for my patients with the stage they’re in and their mobility.  Even if I’m going to have them performing exercises in a wheelchair or leaning onto a walker and doing leg exercises, that still counts as movement. 

Other options include: 

• Pilates
• Yoga
• Chair yoga
• Walking
• Swimming
• Trampolines
• Whole-body vibration machines

If you’re able to manage your diet and exercise, you don’t get stuck in the disease and feel desperate. You have hope. I tell every one of the ladies in my program that there’s something you can do for your condition and you can incorporate some kind of exercise despite what your doctor has said. You can do this, and have to hold onto that. You have to move forward all the time. 

And as you might guess, your attitude can make a big difference as well. It’s important to keep your spirits up through self-care.

Self-care options include: 

• Aromatherapy
• Self-massage
• Dry brushing

One thing that works for me is to remember that everyone has something beautiful about them. I hated my legs. But then I began to realize that I have a beautiful smile, which of course I have to cover with a mask now, but even so! I have a lovely smile, my skin is good, my hair is shiny and healthy. Look at the things you can love about yourself.

With all of this, the point is to show patients that surgery isn’t required if they don’t want it. They’re still going to have those nodules, but they’ll fit into their clothes much better. They’ll feel better. They’ll lose weight. 

Commitment to the Cause 

What’s exciting is when I started, we didn’t know much about lipedema. Even now, not all lipedema therapists understand lipedema. It is best to find a therapist who can do lymph drainage and also someone who can coach you with your diet and help keep your spirits up.

At the last fat disorder conference, we heard vascular surgeons, plastic surgeons, and therapists sharing information. The physicians have to understand what we therapists are doing to become part of this awareness movement. More and more, awareness for lipedema is getting the attention it deserves. That’s how we’re moving ahead. 

I've been working for nearly 40 years. I'm not going to retire until the doctors know and understand lipedema and Dercum’s because I don't want to hear any more stories like the ones we hear all the time now. Patients deserve to be recognized and also treated with respect and knowledge.