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Review for Lymphatic Education & Research Network, New York, NY, USA

Rating: 5 stars  

I have Primary Lymphedema but was only diagnosed in my mid-30s. There is a general lack of awareness to this disease. Had I known sooner I may have had a better outcome. General Practioners know nothing about it's affect on your body or other organs and what you should do to alleviate some of the issues. Most GPs recommend compression stockings - but that is merely one small thing you can do. I fear that my lymphedema is spread out throughout my body. This is a progressive disease that requires multiple forms of DAILY regimes - proper skin care - massage - compression - proper nutrition - water intake - fat-free, carb-free, salt-free diet. This disease is not for the faint of heart. There are ups and downs - and life is just not easy with such a disease. AWARENESS IS A MUST - SO THAT THOSE WITH THE DISEASE MIGHT GET THE ATTENTION THEY DESERVE - AND FOR THOSE WHO ARE MAYBE NOT AWARE THAT THEY EVEN HAVE IT.

Role:  General Member of the Public