Lipoedema Legs - Cally's Story

At 49 years of age, Cally Day, a fit and active lady living with Lipoedema, has been kind enough to share her story to raise much needed awareness of the condition and the importance of getting Lipoedema liposuction on the NHS. "From puberty, around the age of 12, I noticed that my calves were much larger than those of my peers. A few years after that, at secondary school, my peers began commenting on how my calves were impressively muscly.  I wasn’t impressed, I wanted slender legs like everyone else. By the time I was 17, my entire legs were larger than anyone I knew and I began to notice deep thick stretch marks behind my knees and down my calves. This was when GPs began to tell me to lose weight. A repetitive narrative that would continue to this day. I rode a bicycle for miles and miles daily, that's how we got around in our teens. Up until the age of 27, when I passed my driving test, I cycled everywhere. 

I've always been physically active in my work and social life, I loved to dance.  Nothing I ever tried had any effect on my leg, I have tried to convince doctors that it was downright FACT but I know they thought I was a lying, lazy, cake-eating, slob.

Data from 50 trials did show, however, that ephedra and ephedrine are associated with 2- to 3-fold increases in psychiatric symptoms (such as irritability and anxiety), autonomic symptoms (jitteriness, trouble sleeping), upset stomach, and heart palpitations. (Harvard Health 2017)

From then on, I decided that everyone else could 'sod off' and I will decide what is a healthy weight for me.

A couple of years ago, I needed an operation to remove my enlarged adenoids, and of course I had to convince the anaesthetist that according to my vitals I was fit and healthy, he tried to hold me to ransom over my weight, which I would not accept. He didn't seem to understand that half my body weight is in my legs. He relented and I had the operation.  Now, if ever a GP tries to blame anything on my weight, I stop them and explain in the hope they understand. 

Health professionals have been obsessed with weight and it's time to educate them. I asked my GP to request funding for liposuction but he was told to refer me to a dietician. Which only goes to show that there is a lack of understanding of this disease from the bottom up.

Frustrated and armed with information from a global Lipoedema support group, I asked to be referred to a Lymphoedema Clinic and there I was diagnosed with Stage 2 Lipoedema and was measured and fitted for compression by the Oedema Nurse which fit well. Thankfully, my dietician is great and she is the first person I've come across who actually knows and understands Lipoedema and we are working on my upper body.

Cally's Stage 2 Lipoedema legs, without and with compression, n.b  flat feet seem to be a common feature of lipoedema

I experience pain in my legs daily and have recently discovered that my walking is time-limited because my knees have started to swell and hurt like a bi*ch.

So, is this the beginning of a very lengthy, miserable life of pain relief and mobility aids? I'm pretty sure it is, after watching my mother suffer in the same way. 

I just want to be more active, buy the clothes and boots suitable for outdoors, but that is not possible, because they don’t exist for people like me. I will have to continue to cover up my legs all year long and it's not my fault!" 

Cally Day

WHAT IS LIPOEDEMA?

"Lipoedema is a chronic progressive disorder of adipose tissue. It affects almost exclusively women and often develops around the age of puberty. Lipoedema is considered to be a rare disorder, however the prevalence of the disease is underestimated because of a poor awareness and common misdiagnoses. Recent findings estimate the prevalence of lipoedema to be 1:72.000 in the general population.1 While the etiology of lipoedema is unknown, multiple mechanisms have been suggested, including genetic inheritance, hormonal imbalance, and microcirculation alterations. Abnormally disproportionate distribution of fat leads to a bilateral enlargement of lower extremities and, in some cases, of arms. Lipoedema is often misdiagnosed as obesity or lymphoedema, leading to an improper management of the disorder. However, a thorough assessment would reveal the disproportion of shape, sparing of the feet and resistance to dieting in patients suffering from lipoedema. Treatment consists of conservative and surgical options. Increased awareness and a better understanding of the disease would enable clinicians to distinguish lipoedema from other similarly presenting diseases and to treat patients at the earlier stages" DOWNLOAD PDF

PhysioPod would like to thank Lipoedema UK and Talk Lipoedema for all that they do to highlight this medical condition.

Our hope for 2021 is that this condition is taught in medical schools and that lipoedema-liposuction is made available on the NHS.

Let's hope that ongoing research helps us we find a cure (in our lifetime) for this debilitating condition.

FOR HEALTHCARE PROFESSIONALS

RCGP LIPOEDEMA ELEARNING COURSE

A booklet which is an essential guide for anyone contemplating liposuction

 ‘Practical Guidance for Patients Considering Liposuction as an Option for Managing Lipoedema’

is only £6 plus p&p from Lipoedema UK

More information on Deep Oscillation in conservative and surgical approaches to Lipoedema please click here.