It was pointed out to me that people with stage 1 lipodema, like I have, are not as obviously affected as people with lipolymphedema (stage 3). So, how did I know I had the condition and why did I seek treatment at this stage?
I grew up knowing my mum had something wrong with her, but it took a very long time to be diagnosed as lymphoedema. In lymphoedema your lymph system is compromised so lymph fluid ends up going out into your tissues instead of moving properly through your body. There it makes the limb bigger and is full of tasty food for infections. There is very little that can be done for lymphodema, no cure, but it can be managed - generally managed better the earlier it is identified. Organisations that represent people with lymphodema can also cover lipodema as there is a relationship between them. I am also a member of the Lymphodema Support Network and you can find out more about both conditions on their website.
Lipodema is a painful tissue disorder, with a genetic cause so it runs in families (manifesting in women). The condition was discovered around 75 years ago but is still very under researched and poorly understood. There is very little treatment for lipodema either.
When Mum was advised she had lipolymphedema, not just lymphodema, we started to learn about the lipodema that led to swelling in the tissues that compromised her lymph system. Lipodema is an abnormal fat deposit, not removed by dieting and not caused by overeating. You can be obese and have lipodema, or you can be a normal weight, or underweight, and still have it. The faulty fat cells therefore aren't removed by dieting as they aren't normal fat. As I read the information about the condition on the website of the charity Lipoedema UK I realised I was saying "yes, yes" as I read down the list of symptoms.
As I knew how badly affected my mum had been, I arranged a private consultation with Dr Kristiana Gordon who runs the NHS team at St George's who are the leading UK NHS specialists in lipodema, thanks to her mentor Professor Peter Mortimer. I wanted either reassurance I didn't have lipodema, or confirmation of my fears so I could start treating it as quickly as possible.
Dr Gordon confirmed I did have stage 1 lipodema from my hips down to my knees (this makes me a type 2 for the people who count types and stages) with some early signs in my upper arms of lipodema developing. I later had a lymphoscintigram carried out which showed that the lymphatics in my legs were not working properly, which meant I am more likely to have underlying lymphodema or lipolymphedema already. It isn't yet possible to tell if I was born with a compromised lymph system or my lipodema has already caused that internal damage to my lymph system. I have not currently got any visible clinical signs of lymphodema - neither Dr Gordon, her team at St Georges or Professor Schmeller at Hanse-Klinik could detect any lymphodema. Professor Schmeller thinks I may be lucky and have latent lymphodema at this time.
My lymphatic functioning in my legs is still sufficiently effective that Dr Gordon considered I could go ahead with liposuction surgery, but if it continued to worsen I would reach the stage she wouldn't recommend it. Dr Gordon reminded me that lipodema is progressive and affected by hormonal changes, so I didn't need to rush into surgery, but, like all other chronic conditions, no-one has a crystal ball so no-one could tell me when or if this would happen.
Luckily because I am under a consultant for a different health condition already I was able to get referred into St George's on the NHS, so they can monitor me and prescribe the compression I will need to wear every day for life. I am very happy with their support and care, and have got used to going everywhere with my beloved funky Lakeland rubber gloves so that I can pull my compression tights up properly.
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