My name is Kerry; I am a mother, sister, daughter and I am also the face of Lipedema.
Lipedema is a chronic, progressive, incurable connective tissue disease identified by a buildup of adipose tissue in the thighs, legs and arms. Lipdedema is a common (11% of women worldwide) and under-recognized medical condition that causes severe pain, bruising, swelling, reduced mobility, joint pain, improper gait, anxiety, vein issues (I now have venous insufficiency and venous reflux); it feels like marbles or peas just beneath the skin’s surface. As Lipedema progresses it deforms the body, and continues even with strict eating and aggressive exercise. Unfortunately many women like me go years without proper diagnosis
Left untreated, Lipedema can have life-threatening consequences.
As Lipedema progresses, it results in a build up in the legs, abdomen, buttocks and arms, blocking the vessels of the lymphatic system which could then lead to lymphedema.
Long term complications caused by Lipedema include heart failure, hypertension, diabetes, loss of mobility, arthritis, and depression.
There are 4 stages of Lipedema. I am diagnosed as high stage 3, Type 3 (buttocks/hips/thighs/calves) and 4 (arms).
My diagnosis came in my 40’s, but I have suffered with the disease over 25 years.
I didn’t understand why I, active and athletic, was getting larger in my legs. Multiple doctors each had no idea. Water pills, diets, circuit training, you name it. Nothing helped.
In my 30’s, I was misdiagnosed as having lymphedema. It was another 8 years later (while talking with a Doctor who asked about pre-existing conditions), that was I told “no you don’t have lymphedema, you have Lipedema”.
In Canada, Lipedema is poorly understood and few Doctors are aware of it. It is very rarely treated in Canada -there is 1 facility that will treat stage 1 – but is not Lipedema specialized. Our medical system –OHIP - does not provide any coverage for this surgery, or any post operative treatments. Neither do any private insurance plans.
Lipedema does not have a cure. The initial conservative treatments include compression and Manual Lymph Drainage (MLD). However, the only way to remove the altered fatty tissue is with surgical intervention by experts in Lipedema treatment.
It is recommended that I have a total of 7-8 surgeries to drastically reduce the diseased tissue in my body. The procedure is a lympth sparing PAL (power assisted liposuction). It involves using a small cannula with rapid vibrations to help break up the Lipedema to safely remove. It requires less force to help protect the lymphatic system which is very important with treating Lipedema.
Many Canadians need to travel abroad to have these surgeries as Lipedema is well recognised and treated in Europe. Germany is where we find a large number of skilled Lipedema specialist surgeons including the few who can operate on higher stages.
My surgical doctor team, located in Munich, Germany, has each specialized specifically in Lipedema surgical treatment for over 10 and 6 years. Since 2019, I have successfully had 3 operations. My health has started to improve in that my risk of anemia has decreased, pain in the operated areas has reduced, and I have started to regain some mobility.
Each surgery carries a cost of 9810 Euros, (roughly $14,300 CAD). In addition is my cost for flight, hotel stay (outside of hospital stay), post surgical MLD treatments and compression garments-resulting in a total of approximately $19,000 Canadian each surgery.
My family has helped, friends have helped, I have cashed RRSP’s, and filled a line of credit.
The financial burden is too great for me to take on my own. I need help – I need to continue to improve my health to prolong my life.
I have operation #4 now scheduled for January 26th, 2022.
Thank you for reading about this disease that I am living with. I am grateful for your compassion and consideration to help me continue with my surgical journey.
