Yesterday marked a significant breakthrough in the treatment of my rare congenital disease, Lymphodoema Distichiasis.

I finally met the elusive doctor that I should have seen back in Oct (when I went to the wrong hospital). He immediately ordered a referral to my GP for me to have ECG/ECHO and have my heart monitored because heart defects are linked to this condition and so far, other doctors have ignored my concerns. Mr. Walker also focused on the chance of swelling in my legs as the condition leaves me at risk of blood clots.

As for the eyes… I am going to donate blood that will provide serum which should be in my tears, but my eyes don’t produce it naturally. Scientists will create a unique eyedrop solution for me that should relieve the inflammation and pain, and hopefully I can reduce the amount of eyedrops I use every day.

My mind is blown at the speed with which this happened once I saw a doctor who recognised my condition and knew how to treat it. Now I’m waiting for the next stages in the process.

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