Fighting Lipedema: Help me fund my treatment

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My name is Joana Luís, and in May 2022, I was diagnosed with STAGE II TYPE 3 LIPEDEMA.

What is lipedema?

Lipedema is a chronic and progressive disease that affects the fatty tissue. It consists of an abnormal build-up of fat cells on legs, thighs, buttocks, and occasionally arms.

Lipedema affects almost exclusively women and becomes noticeable around puberty, or other hormonal fluctuations. People suffering from lipedema tend to have normal upper bodies and torsos, and disproportionately larger lower bodies. This is often the key difference between this disease and obesity. Lipedema causes fat cells to lump together into nodules, which then harden as they grow larger. The infected fat nodules DO NOT respond to diets nor to exercise, potentially causing associated disorders such as body dysmorphia, mental health problems and eating disorders. At the same time, these infected fat nodules are very painful and incapacitating, affecting daily life in many ways.

My story

I have had thick legs for as long as I can remember. I was 8 years old when I first noticed that my legs were bigger than those of other girls. At age 17, I lost a lot of weight very suddenly, yet my legs remained the same. That’s when I realized something was not quite right.

Fortunately, I managed to build my self-esteem and learned to like and accept my body, despite the stigma. In my early 20s, my legs became even bigger, and I started feeling more and more tired throughout the day, with pain and discomfort presenting itself mostly during the evening and night time. Today, at age 32, I’m frankly scared of how quickly lipedema took over my legs in the span of 2 years. My mobility has decreased tremendously. It’s hard to walk, my legs are heavier and more deformed than ever, and I am in constant pain and absolute discomfort from the moment I wake up. Simple day-to-day things such as going up and down the stairs, walking more than a few steps, kneeling, and even sitting or standing, has become excruciatingly painful. I’ve had to gradually give up my hobbies such as dancing, hiking, and cycling, due to the extreme pain associated with any kind of physical exercise. It’s as if my upper and lower bodies don’t belong together, with my legs not being able to do what my body wants.

At last, I found hope!

I guess that with lipedema comes not only self-judgement but that of other ones as well. There is always that someone who tells me that it’s my own fault, and that I ought to eat healthier and exercise harder. Knowing that this obviously isn’t true, it’s still very hard to shake off the associated guilt and shame. After more than a decade - seeking help with no success - hope came in the embodiment of a doctor, who saw more than just “fat legs”, and pointed me in the right direction.

I found Dr. Burgos de la Obra in Madrid, a leading European Reference when it comes to lipedema. His team diagnosed me, answered all my questions, and put me in contact with other women suffering from lipedema. These women have been very supportive throughout my journey.

Being a chronic condition, lipedema has no cure but there is treatment available.

I need 3 surgeries to remove all the infected fat tissue from my legs. For each surgery I need a specific type of compression garment, post-op physiotherapy to manually drain my legs, and specific medication and ointments. None of these medical costs are covered by insurance norby the national health system of my country. In fact, the reason I couldn’t find any medical assistance regarding this disease in my country was because lipedema was only formally recognized by the WHO in 2018. Lipedema is still very much unknown and not studied enough in a lot of countries, and to add insult to injury, the treatment is still considered an aesthetical procedure. Which essentially means that there is no support to get from health systems regarding the medical expenses.

My plea

Unfortunately, these three surgeries and the post-surgery care I need, translate to an amount of money that I simply do not have. I need 23.500€ to treat and stop the progression of this disease. Lipedema has taken a lot from me, and I need to reconquer it all back, and not let the disease grow any further. This treatment equals mobility, quality of life, and pain-free days. While I also hope that there will be an aesthetic improvement, this was never at the top of my list. For these reasons, I have to turn to crowdfunding to ask for help to cover my medical costs.

Any donation, and I truly mean any, would be very appreciated and more than I could ever dream of.

While I do have the strength and will to go through this process, I do not have the financial means. Help me get my health and my life back. Help me be ME again.

My most sincere thanks to everyone who took the time out of their day to read and know about my story. This means more to me than you’ll ever know.

Joana Luís.

You can find a detailed list of all my medical expenses below, as well as a collection of references and medical articles about lipedema.