This post was written by my Wife, Emma.
Our Daughter Megan is now 21 but was only 15 when we first became aware that her legs were shaped very differently to mine and my younger Daughter’s legs. Megan began to hate her legs and would always cover them up with the clothes she was wearing. She was sure that exercising and dieting would sort out her issue, so after losing three stone and seeing no change in her legs she became very disheartened. Our GP said exercise would sort it, but it didn’t. She was at the gym 3-4 times a week while losing the weight! Megan found that as the lipoedema fat grew, her legs would physically ache and hurt, bruise and the lower part of her calves discoloured purple, due to minimal blood flow. Even massaging them hurt. At this stage, we did not know what was causing it. A ‘ trying on’ session in a clothes shop upset Megan so much that she started investigating further why her legs were like they were. Until then, she had just accepted it. Very soon she realised it wasn’t her fault and more and more research was required.
Lipoedema is a chronic condition whereby fat cells abnormally build up in the hips, buttocks, legs and occasionally arms of women (and, far more rarely, men), resulting in often painful pockets of fat that do not go away with exercise or dietary changes. The condition varies in appearance from woman to woman, but every woman with lipoedema suffers from a frustrating lack of awareness among the public and medical community alike.
Lipoedema has had little research, is rarely taught and is poorly understood; as a result, often misdiagnosed as obesity or lymphoedema (swelling that occurs due to the lymphatic system not working correctly), and only limited treatment options are available.
Lipoedema treatments are not very accessible at all. Women usually must know what it is they want and either find it themselves or put it forward as a suggestion to their GP (and you read earlier what our GP said!)
Megan’s consultation with her surgeon in Berlin
An option is liposuction which reduces the size of lipoedema areas and lessens the associated pain, but this has many problems. Liposuction is available on the NHS if the patient has lymphoedema – Megan doesn’t, several women have been successful there, but usually only because they were quite extreme cases.
It’s virtually impossible, however, to get funding for tumescent liposuction on the NHS, and to my knowledge, no one diagnosed with just lipoedema has gone down that route. Meaning a growing number of women are forced to fund it themselves, and many choose to go abroad where there are more choice and more experienced surgeons.
The advice given to Megan is that if her lipoedema is untreated, she will be in a wheelchair by the time she is 35.
As a family, we have decided that our only option for Megan to have the quality of life she deserves is to take her abroad to have surgery. She could have the surgery here in the Uk, but it is over DOUBLE the cost.
During the Summer I went with Megan to see a surgeon in Berlin – Dr Czarnecka. She confirmed that Megan’s lipoedema was quite advanced for her age and that it would only get worse. She advised four operations over the course of a year to eliminate the lipoedema fat from her legs, bum, lower stomach and arms. The medical procedures (Operations) although painful are essential. Schedules for her first three operations are November 2019, February 2020 and June 2020 with the fourth operation in Sept 2020.
The cost of the operations will be £24,000. Jay and I will fund the flights, hotels, subsistence and aftercare (Manual Lymphatic Drainage)
If you could support Megan by making a donation and/or sharing it with friends, family, or colleagues we would hugely appreciate it.
I know that money can be tight, so please know that even £5 helps us get closer to our goal.
Let me know if you have any questions and we will be happy to answer them.
Thank you from Megan, Emma, Jay and Bethan xxxxx
What can happen if left untreated