Lipoedema is not a term that many are familiar with, but those that have the condition probably wish they were not familiar with it at all. It's something that I have not worked with much over the last seven years, in fact, I worked with one lady when I was still doing my clinic hours at college and until very recently I hadn't seen another case. That's not to say they are not to be found everywhere, unfortunately, the condition is way too common but quite often the suffers are unaware they have it. I'll explain why in a minute.
Firstly, what is lipoedema? Lots of people have heard of lymphoedema and it's something I often talk about.
According to Dr Helen Mackie of the Lymphoedema Clinic at Mt Wilga Hospital:
Lipoedema is a symetrical swelling of both legs, extending from the hips to the ankles, caused by deposits of subcutaneous adipose (fatty) tissue. The underlying cause of these fat deposits remains unknown. While lipoedema is not a disorder of the lymphatic system, it is frequently confused with bilateral leg lymphoedema. The fat deposits in the lower leg extend to the ankles often with flaps of tissue hanging over the foot, but the feet are not affected. Typically there are fatty bulges in the medial upper thigh and the medial lower thigh, just above the knee. Clinically the affected individuals complain of increasing swelling as the day progresses which is relieved by prolonged elevation of the legs overnight. Pain and tenderness is also a feature of the condition.
If you'd like a copy of the entire paper, please let me know.
The reality of the condition is that it affects mainly women and mainly the lower half of the body, so you could be a size 12 on top and a size 22 on the bottom. The legs usually feel soft, almost baby-skin soft, and sufferers bruise easily and are sore. The symptoms usually appear around puberty and there are often hormonal imbalances present.
When they go to their doctors because they are putting on weight for no reason and only on the bottom half they are often told they are fat and need to diet and exercise more. While both of these things are generally good advice for an overweight person, this condition doesn't respond easily to those measures - what happens is the upper body loses weight and tones up and the lower body stays pretty much the same. Some weight and inches may be lost in the lower body but generally not much. As you can imagine, this can lead to a cycle of depression.
With any luck, sufferers come accross someone, anyone, who recognises that what they have is lipoedema. When you can find out about the condition, how it affects you, what you need to do to minimise the impact on your daily life, then you can start the life-long journey of control/maintenance. It's also very important to realise that it isn't the patient's fault - it is a genetic disorder - they haven't been doing anything wrong.
It's a horrible diagnosis. There is no effective medical treatment for lipoedema, but the accompanying conditions, eg hormonal imbalances, can be treated to try and help stabalise weight gain, along with dietry and exercise advice.
Treatment with manual lymphatic drainage and lower grade compression garments can bring some relief, but because this is a life-long condition it gets expensive to have treatment as often as is necessary. Patients usually spend time every day doing their own simple lymphatic drainage, elevating their legs and trying to exercise as much as they can.
Having not come across lipoedema in my clinic for years, in the last few months I've had three patients come in - none of them diagnosed.
The first patient actually knew of the condition, her mother and daughter have it, but she doesn't believe she does, even though she is showing the classic signs. When she is ready we can do some regular treatment.
On Friday and Saturday last week I had two new patients who seem to have lipoedema. Neither had heard of it.
The first is in the very early stage, she is very aware of her body and any changes it goes through and she is ready to do everything she can to keep the progression at bay. She has spoken to her physiotherapist about the condition and I have sent her Dr Mackie's paper and they will work together to try and control the condition.
The second patient is coming in for manual lymphatic drainage for her arm post breast cancer. When I gave her the once-over I noticed that her lower body is out of proportion to her upper and as I know that she exercises at least four times a week and does some really heavy workouts with a trainer I asked a few more questions. Her father has very swollen legs, as do her two sisters and one of her daughters. It made sense to her. I've sent her Dr Mackie's paper as well and she will take it to her GP who is open and willing to learn about new things.
It's all about education. Medicos are not taught about this condition and so they can't be expected to be able to diagnose it.
There is an amazing support group here in Australia - the Lipoedema Australia Support Society. They do great work sharing information to help sufferers cope. They also have a facebook page, Lipoedema Australia, which gives lots of great information. Check them out if you'd like more infomation. Or of course you can send me a comment and I'll answer as best I can.