My Challenge with Lipedema

 

 

Hello, My name is Danni and I have Lipoedema.

 

Lipoedema is a chronic, progressive, incurable connective tissue disease characterised by adipose tissue build-up in the thighs, legs, and arms. Lipoedema is a common (affecting 11% of women worldwide) and under-diagnosed medical condition that causes severe pain, bruising, swelling, decreased mobility, joint pain, improper gait, anxiety, and vein problems. It has the texture of hard, fat noodles just beneath the skin's surface. Lipoedema deforms the body and persists even with a strict diet and aggressive exercise. Unfortunately, many women, including myself, go years without receiving a proper diagnosis. 

 

Lipoedema causes fluid to accumulate in the legs, abdomen, bottom, and arms, clogging lymphatic vessels and potentially leading to lymphedema. Lipoedema-related long-term complications include heart failure, hypertension, diabetes, loss of mobility, arthritis, and depression.

 

There are 4 stages of Lipoedema. I am diagnosed as early stage 3, Type 4 (My whole leg, bottom, stomach and arms as you can see from the pictures.)

 

Despite the fact that I was exercising and eating a healthy diet, I couldn't figure out why my legs were getting bigger. Several doctor visits where I was told that I simply needed to go on a diet, that I was obese, that I should try water tablets, and that I should move more. I had a feeling there was something wrong with my health. I would not have recognised the symptoms if it hadn't been for the other ladies speaking out about Lipoedema on Facebook groups and Instagram. I was diagnosed by a specialist in London a few months ago.

 

Lipoedema is a condition that is poorly understood in the United Kingdom, and only a few doctors are aware of it. It is very rarely treated in the UK – there are only two facilities that will treat Lipoedema – but the cost is, as you might expect, exorbitant. My private medical insurance does not cover Lipoedema treatments, because it is not a recognised disease, it is classified as cosmetic surgery.

 

There is no cure for Lipoedema. Compression and Manual Lymph Drainage are two initial conservative treatments. However, the only way to remove the altered fatty tissue is through surgical intervention by Lipoedema treatment experts.

 

It is suggested that I undergo three surgeries to drastically reduce the diseased tissue in my body. The procedure is known as lymph sparing WAL (Water assisted liposuction). It entails using a small cannula with rapid water vibrations to help break up the Lipoedema so that it can be removed safely. It takes less force to protect the lymphatic system, which is critical when treating Lipoedema.

 

Many Women from the UK need to travel abroad to have these surgeries as Lipoedema is well recognised and treated in Europe. Germany is where we find a large number of skilled Lipoedema specialist surgeons including the few who can operate on higher stages.

 

However, I've decided to visit Poland. The surgical doctor team in Bialystok, Poland, has been specialising in Lipoedema surgical treatment for over 6 years and can remove 15 litres of Lipoedema fat from my legs in a single operation, reducing the number of surgeries I may require.

 

Each surgery carries a cost of 40,000 PLN, (roughly £7450). In addition are my costs for flight, hotel stay, post-surgical MLD treatments and compression garments.

 

I am not normally the type to seek assistance; I am a self-sufficient individual; however, the financial burden is too great for me to bear on my own. I must continue to improve my health in order to live a longer life.

 

I'm hoping to raise as much money as possible for at least one operation to help alleviate the pain, and I'd be grateful for any assistance you can provide.

 

Thank you for taking the time to learn about the disease I'm dealing with. I appreciate your compassion and consideration in assisting me with my surgical journey.

Danni xxx