Lipoedema from a patient advocate perspective

Out of the Ordinary

Michelle Ellis

I found out I had lipoedema when it was too late. I was 30 and had already developed lipo-lymphoedema.  I am lucky I was diagnosed at all: there are 3.2 million women in the UK with undiagnosed lipoedema. These ladies are still beating themselves up as to why their bodies do not behave in the way text books, magazines, friends, families and their doctors say it will act. These ladies are still fighting a lonely losing battle. So I am most fortunate to have the knowledge of why and what lipoedema is as far as some medics know. My personal quest for knowledge has grown and evolved into a fully functioning support group for other ladies with lipoedema - Lipoedema Ladies.

What if I have passed this on to my children?

When a woman is first given the news or stumbles across a lipoedema website, things start to fall into place. A relief and disbelief all at once consume you. This is the reason I can’t lose weight on my legs and bum, this is the reason I can’t bear to be prodded on my lumpy shins, this is the reason my knees play up, this is the reason I am hypermobile, this is the reason my legs swell up, this is the reason I don’t travel well, this is the reason I was poked fun at, this is the reason that arm and leg sleeves in clothing are always unbearably tight, this is the reason my grandmother had her legs amputated… this is the reason - lipoedema! Why didn’t I know sooner? Why didn’t my grandmother if it was first diagnosed in 1940? Why didn’t my father get it?  What can I do to fix it if diet and exercise don’t work? How do I get help if my doctor doesn’t even know what it is? What stage am I at? What if I have passed this on to my children and their children?

What am I looking for?

  • a disproportionally larger lower body than upper.
  • the limbs are large, pale and colder than unaffected areas.
  • a distinctive ‘Fat Pad’ below the knees.
  • ‘Saddle Bag’ appearance to the thighs.
  • the upper arms when affected have an overhang above the elbow.
  • the tissues of the limbs appear loose and floppy.
  • the limbs are often very tender or painful to touch.
  • bruising occurs easily and without apparent cause.
  • bulging fat leads to a mattress effect on the skin.
  • if there is no lymphoedema element, the limbs will look symmetrical and Stemmer sign negative

How can we change this?

Can we change and improve lipoedema treatments?

The questions above I asked myself and in the main most women ask the same questions. A thirst to know they are not alone with lipoedema, need to know where to go for the correct treatment and especially need hope.  That is where Lipoedema Ladies can help to empower these women to improve their quality of life. We have an online presence in this fast multimedia world, Twitter account, Facebook open page and a private chat group on Facebook too. We have physical local meets and an annual national meet.

Our Website is our public face we aim for a lifestyle focus, with fashion, real life stories, recipes and exercise. It is important to learn how to adapt and care for ourselves, so we cover mental health, skin care, treatments and new advances in research. The website also addresses the medical issues such as how to tell the difference between Lipoedema and Lymphoedema.We have a section that guides ladies on how to get the treatment they deserve in their area.

Lipoedema Ladies have connections with medical professionals and conduct presentations and such at lymphoedema meetings and nurses’ ongoing professional training.  We have a wealth of knowledge for researchers and trial new treatments and garments. We are working to raise awareness and money for more research. We hope by all of us working together, instead of services being so stretched in lymphoedema clinics, we are able to push and put forward the case for more money from the government and NHS to open lipoedema clinics to treat this disabling condition that affects at least 3.2 million women in the UK. That is over 500 times the number of lymphoedema patients.

So when you diagnose or see a patient with lipoedema and think about telling her, you are giving her a great gift, she will now know the answer to all her own whys and can now make informed decisions regards her health. I ask you not to just leave it at that though, please give her hope, for there is hope and please give her our website address.