· Tara’s bottom half is weirdly large. You know it. We know it. Everyone knows it.
· Guess what?! It’s a FAT DISEASE! WHAT!? Don’t worry, it’s not contagious.
· It doesn’t just make her fat: it causes damage to veins and the lymphatic system and gets progressively worse. Gross. See below or Google.
· Nothing is covered. Surgery is not available here. Going to Germany to the guru.
· Holy crap, that’s expensive. 3 surgeries in 4 weeks plus 2 weeks of recovery in October 2018.
· Read below for more info and pics.
· People are asking how to help – here goes! (THANK YOU!)
Help us leave Tara’s ass in Germany.
Intrigued? So are we. After 43 years of frustration and ridicule, Tara finally has an answer to what is going on with her body.
We now know it’s Lipedema, also known as the “painful fat disease”. Luckily, she has a good sense of humour about her ‘special bum’ but it’s fair to say she’s angry it’s taken so long to diagnose. The disease has caused damage to her vascular system, lymphatic system and self-esteem. The hereditary part is even more upsetting….
Lipedema is a serious, progressive, disease that affects approximately 10% of women. Finding out about it was more difficult than it should have been. Try googling tiny waist, big butt and you get hundreds of pages of how to become a Kardashian. UGH. No, Google. Just no.
They are not sure what causes Lipedema but it’s speculated that it is triggered by a hormone related event like puberty, pregnancy, or menopause; or by trauma. Onset is usually in adolescence but the age of average diagnosis is 44 years old. That’s not ok.
So here’s what it looks like. Fat accumulates below the waist in a grossly disproportionate fashion but feet are not affected. The upper body remains thin with an extreme waist to hip ratio (Tara has a 36” waist and 59” hips!) Arms can be affected and Tara is in the early stages of that – she will have surgery on her arms as well. The upper body skin is smooth but the lower body is bumpy with cellulite because of the increase in creation and size of fat cells and the nodules it creates.
Women with Lipedema gain weight much easier (DUH), bruise easily and have less skin elasticity.
But they also have hyper-flexibility – which is super useful and a fun party trick!
Lipedema fat deposits cannot be metabolized so they do not respond to diet or exercise.
The fat continues to grow, making the disproportion increasingly obvious. This then affects gait and proper alignment of hips and knees. The fat blocks proper venous function as well as lymphatic system function leading to varicose veins and swelling.
Now that we know what we are dealing with we need to get her treatment. She is now Stage 2, level 3 with large varicose veins. To avoid further complications it has to happen now.
STAGES of LIPEDEMA (Stages 1-4)
When untreated and allowed to progress, the lymphatic fluid is so trapped it causes severe swelling and starts to involve the feet. Eventually it begins to harden and is plagued with ulcers due to lack of circulation. You can google it for more disturbing pictures but we think you get the idea and the need for urgency in seeking treatment. *Not actually Tara's legs below. WHEW.
We have both been working hard since January to lose weight (110 pounds each to date) and Tara has been told by her doctors she is no longer obese. What remains is the fat disease. (She’s not convinced and is still working towards being the best she can be in preparation for next year but understands her limits.)
WAL (Water Assisted) liposuction is the only known effective treatment for Lipedema. It involves using a water jet to help release the fat from the tissues. It is more gentle on the lymphatic and venous systems. It is not a cure, but people have had a lot of success in managing progression/pain even after 8 years post-op.
We want to be clear. WAL is NOT a cosmetic treatment. It’s life-saving. They aren’t concerned with how her body will look, but in removing as much of this non-metabolic fat as possible. There are no guarantees that she will look better, but reports of immediately diminished pain are the norm.
The surgery leaves patients with holes that will be left open to drain post op. We were told to bring shower curtains to protect the bed …….
Germany is the gold standard for treatment of lymphatic disorders. In Germany, Lipedema and Lipo-lymphedema are widely recognized, treated and funded. Canada is way behind. Most doctors here don’t even know it exists. There are some doctors in the US that have now been trained and some insurance companies there are starting to coming on board there but there is a long way to go. Cost for treatment in the US is similar to Germany but we are choosing to see the expert. (And also we are avoiding “The Donald” at all costs.)
Tara will require 3 surgeries in 4 weeks - October 13, 30 and Nov 15 of 2018. Plus 2 weeks of recovery before she can fly home. She Each surgery is $5200 euros ($7662 CAD at today’s rate) for a total of $22,986.00 CAD for surgery alone. On top of this are travel costs, accommodations for 6 weeks in Germany, food, new compression garments after surgery and approximately 32 days off work. We will need to bank all of our vacation and take unpaid leaves as well.
The clinic is about 1.5 hours outside of Nuremberg in a small town, so we will need to rent a car. We have found a small apartment within walking distance of the clinic for $25 euros a day.
When all of this is said and done, Tara will need a year to heal and then will need all of the excess skin removed – and there will be a lot. Lose weight they said. You’ll look better they said….
Did we mention we have never been to Europe? Or anywhere really?
It’s all incredibly overwhelming.
A dear friend has already gifted us some Aeroplan miles to help us with the flights ❤ We are so thankful! We will only be responsible for the taxes which will be approximately $1400. We are hoping to upgrade Tara’s seat for the long flight back for her comfort. Having room to move around will be crucial in avoiding blood clots and controlling swelling post-surgery.
We were encouraged by our friends and family to post this page even though it feels uncomfortable and awkward to ask for help…. We aren’t sure how we are going to make this happen, only that we need to.
In total, Tara’s “adventure” will cost approximately $35,000 allowing for a small buffer for unexpected complications that may arise.
Thank you for your time, my friends. Please share!
Lisa and Tara
#Lipedema #ItsNiceRight #OMGBecky #NoOneSingsRapSongsAboutSmallButts #NotAKardashian
We are also passionate about spreading awareness. We are working with our doctor to get clinicians on board to diagnose this disease in Canada and offer WAL treatment here with full OHIP coverage. This is a disease. It’s not our fault. And worse, it’s hereditary. Our eldest daughter has symptoms and we are now part of a crusade in Canada to get treatment for our little girl – and every other Canadian woman that has a right to be heard, understood and treated!
- Kelsey Kane
- Paul Binnendyk
- Tina Dias
- Sylvana La Selva
- Kirti Solanki
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