To my fellow patients and families—
I am a 70 year old grandmother and lymphangiomatosis patient. To my knowledge, I have the dubious distinction of being the oldest one on record with this disease entity. My symptoms presented when I was 12 years old, although the correct diagnosis was not made until I was nearly 30. Over the years, I have had many complications and more treatments, including thoracotomies (3) to remove cysts, several thoracentesis to drain chyle and lymph’, multiple sclerosings, countless chest tubes, dozens of infections. I’ve been on MCT diets, Depo-provera injections, and a variety of meds. I am currently on a low dose of Sirolimus.
Nonetheless, I’ve led a full and ‘healthy’ life: Performed well in school, remained active, married, had children, worked full time, traveled, I am retired now, but quite independent and enjoying my grandchildren. People who don’t know my medical history are not aware that I have any medical problem at all.
I know everyone has a unique trajectory with this nasty disease. My heart goes out especially to the little ones who can’t understand what is happening with their bodies. But, I am living proof that one can lead a good quality of life despite having GLA. For that, I’m abundantly grateful.
Sending sincere good wishes and encouragement to hang in….. There IS hope!