Help Me Take Care Of My Daughters and Stop this Disease

Hi, I'm Ornela.

For those who know me, you may know that I've been struggling with lipedema for more than 15 years.

Even I didn't know about this disease at the time.

Since puberty, I've had pains in my legs, and often the doctors mistook it for arthritis.

You could tell that something was wrong with the lower body, all of a sudden being disproportionate with the upper body; I always felt something was not right.

Since that age I started feeling uncomfortable with myself.

Not wanting to buy clothes because choosing a size far bigger than the top makes shopping way more difficult and discouraging.

Wearing long trousers while everyone is in shorts during hot weather because you don't feel comfortable showing your legs.

Avoiding friends gatherings when they plan on going swimming.

I became aware of Lipedema a few months ago, by accident, when I was scrolling through YouTube and saw a woman’s legs that looked like mine in a video about Lipedema.

Finally it all made sense!

I started to understand why, after losing weight, my legs stayed big, why walking is difficult, why my legs feel so heavy, why exercise and diet never change my legs, why my legs bruise so easily, why I have brain fog and memory loss, and why I have fatigue.

After all those years of feeling shame and self-blaming, finally everything clicked.

This thing had a name: lipedema.

It was not my fault...

There was an explanation...

After two pregnancies, lipedema seems to have spread in my abdomen, too, which causes pain without any reason at all. The pain starts suddenly, even after a sneeze or a laugh. And it takes hours and sometimes days to go away, hurting and making it difficult for me to walk.

Sometimes this affects my mood because I'm in pain. And this state of mine gets reflected in my family life and my children.

This abdominal pain has remained a mystery to every doctor I've seen for the last 6 years.

None of them could find a reason for what was causing it.

Adding that to the other pains, it makes everything difficult in my daily life.

After trying to get a diagnosis in the UK, and most of the time being dismissed and ignored because the NHS doesn't seem to want to recognize these disorders as diseases, I decided to find a solution abroad.

Even with travel costs, the surgeries are more affordable in Greece than in the UK and would provide more aftercare to ensure a successful recovery.

If we can raise enough money to cover two of the surgeries needed along with the travel costs for me and a travel companion to care for me, I can be on their schedule for the first surgery as early as September.

The second surgery would be scheduled for approximately four to six months later.

Friends and family have generously helped us from the beginning.

I resisted doing this GoFundMe but cannot get these surgeries without help.

Even a small donation would make a difference.

Each surgery is 4 hours long and costs around £9,000.

I will be using most of this fundraiser for the surgeries and some of it for much-needed aftercare expenses.

The list below explains what monetary donations will be used for:

• Purchase of compression garments for use before surgery
• Flight costs
• Pre-surgery tests
• Hospital fees
• Surgery costs
• Accommodation for 10 days in an Airbnb near the hospital
• Special transport is recommended from the hospital to the Airbnb (because after surgery I will experience liquid loss).
• MLD (Manual Lymphatic Drainage) for the first few weeks—essential massage to stimulate the lymphatic system and reduce swelling.
• Purchase of medication needed before and after surgery
• Purchase of a pneumatic pump for use after surgery (helps to squeeze the swollen limbs and moves fluid back towards the heart)
• Purchase of other compression garments for use for a long time after surgery

This disease is impacting my quality of life, and based on doctors advise if I don't have these surgeries soon, the condition will get worse as time goes by.

My closest family and friends know that this disease has had a physical, mental, and emotional impact on me.

What is lipedema?

Lipedema, first noted in 1940, is described as an irregular distribution of painful fat and swelling in the legs, hips, and butt. It generally spares the hands and feet, but as it progresses, other body parts (stomach, arms, neck) can be affected. Lipedema fat isn’t reduced by diet or exercise. When patients try to lose weight but can’t improve their unusual proportions, many doctors who don’t recognize the disease call them noncompliant.

It occurs in an estimated 11% of females and is often mistaken for obesity or lymphedema. Most people with lipedema aren’t diagnosed in the early stage, when their symptoms are mostly cosmetic. As time passes, it can lead to significant pain, impaired mental health, eating disorders, and countless debilitating complications.

Why don't more people know about it?

Health professionals don't often recognize diseases that aren't covered in medical school. Who decides which diseases deserve mention, awareness, or funding for research? Fat stigma has long squelched research into diseases that look like obesity; such bias leads people to look at lipedema bodies and call them fat. Once society labels a person fat, we view their health problems as self-inflicted.

Besides, it predominantly impacts women, and most adversely those without a lot of money. Fat, female, and far from wealthy—these are not priority patients.

We don’t know what causes lipedema or how to cure it. Activists are putting more money into research and raising awareness, but it's a long, uphill battle. "Conservative" treatments include uncomfortable—and expensive—compression garments plus manual lymph drainage. There is lipedema surgery, a highly specialized and precise form of liposuction. It's expensive and discouraged by insurance companies. Weird for those who supposedly prioritize preventative care.

I'd say pervasive fat bias still rejects the notion that one can be fat but not "at fault." The preferred narrative is that fat folks should fight and "do the work" to not be fat.

Why is it so hard to get lipedema treatment?

There still aren't many lipedema experts around the world. In fact, there's no branch of medicine that specializes in the disease. You have to find someone who chooses to study and understand a disease their colleagues are happy to ignore. You need an expert who will stay up-to-date with the latest research, put up with nonsense from insurance companies, and listen to their patients' experiences.

Not all self-proclaimed experts do this. Some lipedema surgeons offer less effective, more invasive, and higher-risk surgeries.

When lipedema sufferers want treatment, they need the time, money, and transportation to seek out the right doctors and treatments. This is no easy task. Insurance companies routinely ignore lipedema, denying necessary treatments every day.

To learn more about lipedema, please visit the NHS website at: https://www.nhs.uk/conditions/lipoedema/

Or the Lipedema Foundation website at: https://www.lipedema.org/

Having two little daughters, rent to pay, and my husband being the only one working makes it difficult to save for this treatment.

If I don't raise the money by July 2025, I will have to delay or forget about the surgeries because we can't afford the costs associated with it.

I have struggled with this decision and believe that God has a plan and a purpose in it.

I would greatly appreciate any financial support you can provide.

I also appreciate your love and prayers if you are not able to support financially, and I would be extremely grateful if you can share to spread the word!

From the bottom of my heart, thank you in advance for your time, kindness, and generosity.

With your help I can continue to fight this medical battle and return to a healthier, pain-free life!