What causes primary lymphoedema?

[GabbiD]

Just wondering if there is a known cause? I have primary leg lymphoedema. I was diagnosed bilateral but my right leg is non symptomatic for the most part. Would I have gotten this no matter what? Or was it because I gained a ton of weight in my late 30s/early 40s? My mom had a foot that would get puffy but was never diagnosed with anything. I want to counsel my daughter on how to avoid it if possible. Since February I have lost 55 lbs. I am in US and thanks to this board I know there is a doctor in Iowa City, Iowa not far from me that does lymphoedema surgery. But he only does it if you are at a "healthy weight". Good motivation. I haven't noticed any change in my lymphoedema with less weight. But I am able to exercise better. Thanks in advance for any insight.

[Lynora]

Primary lymphoedema can develop spontaneously, usually in one limb, as a result of the lymphatics in that limb losing function, due to a genetic weakness. It can happen at different times in life - teens, 20’s and later in life. Research is ongoing, but I’m not sure if there is any published outcome. It can be hereditary, but may skip a generation.

Keeping a healthy weight can be helpful, and good skin care, to ensure healthy skin. Being vigilant about treating abrasions. Moderate exercise is a good thing - for anyone!

[DeborahS32]

Hi Gabbi, no great insight from me on cause, but I have exactly the same type of primary lymphoedema - turned up suddenly without warning, symptomatic in one leg but not the other. My specialist doctor said exactly the same as Lynora. In my case it started part way through a day when I did an exceptionally long walk (as part of a longer circular walk around London).

The good news for me has been that getting measured professionally around every 3 or 4 months and wearing the prescribed made-to-measure thigh-length pressure and foot glove along with daily exercise and being very careful with skin care for a year now has produced a fantastic reduction in size of the affected leg. I've had no recurrence of any infection, and am able to be far more active than before the treatment started. I've just returned home from a week's walking holiday in mountains.

I'm not aware of any other family members who've had this. Neither of my sons have it, and I've advised them to keep a careful watch just in case - not to walk silly distances like I did, and watch their skin care.

Hope all goes well with you - I'm mega impressed with your weight loss! what an amazing achievement. I'm sure this will have health benefits way beyond just the lymphoedema.

All the best, Deborah