From Jorge D. Faccinetti – co-founder. With a pituitary disease like acromegaly, Cushing’s, hypopituitarism, and others, or for that matter, any other chronic condition, a big part of the battle is to get up every day and get on with life. We understand that sometimes this is easier said than done, but it helps to find another purpose. Just lamenting being struck with a rare disease won’t get you anywhere. Six in a million, mostly a random chance, and I happen to be one of the “lucky ones,” you say to yourself.
Many people I know in this community have gotten involved either by directly doing something or supporting other people’s work to get the word out, raise awareness for early diagnosis, or do something to help improve people’s quality of life.
This story is an example of getting on with it. If you have acromegaly, you already know how hard this must be; no need to spell it out or illustrate it here.
Yesterday, Risa called me to tell me she had won a Canva contest from more than 1000 entries from this video. The video is about her struggle and her awesome plans to bike from Canada to Mexico on the PCH, a.k.a. Pacific Coast Highway, this September.
These are Risa’s plans. We are going to be there. I’m going to get on my bike, albeit electric, and join her on a portion of her ride. I hope you support this effort and you spread this great story about acromegaly, human grit, perseverance, and getting on with it! Click here if you want to contribute!
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