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 done.
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 been little researched, is rarely taught and is poorly understood; as a result, it is frequently misdiagnosed as obesity or lymphoedema (swelling that occurs due to the lymphatic system not working properly) and only limited treatment options are available.
Lipoedema treatments are not very accessible at all. Women usually have to know exactly 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!)
An option is liposuction which reduces the size of lipoedema areas and lessen the associated pain, but this has a number of problems. A certain type of liposuction is available on the NHS if the patient has lymphoedema - Megan doesn’t, a number of 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 who has been diagnosed with just lipoedema has actually gone down that route. This means a growing number of women are forced to fund it themselves and many choose to go abroad where there is more choice and more experienced surgeons.
Megan has been told that if her lipodema is not treated, 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 lipodema was quite advanced for her age and that it would only get worse. She advised 4 operations over the course of a year to eliminate the lipodema fat from her legs, bum, lower stomach and arms. The operations although painful are essential. Her first three operations are scheduled for November 2019, February 2020 and June 2020 and the fourth operation will be in Sept 2020.
The cost of the operations is £24,000. Jay and I will be funding the flights and hotels.
If you could support Megan by making a donation then sharing it with friends and family, we would all 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
- emily treen
- Thaiba Choudhury
- Amy louise Charlesworth-Rees
- Ruud Joosten
- Tim Quin
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