May is PWS Awareness month and every year we bring the world's attention to this syndrome.
Our syndrome.
We write positive and uplifting things about PWS; we write of successes and great support. And all this is fantastic - after all, 40 years ago very little was known about PWS and management skills were basic to say the least; residential options were minimal and diagnosis at a young age was still done at a clinical level according to physical characteristics. If you were lucky.
So, I feel heartened to see the young faces of today, to know that GHT is well-known treatment for PWS and I am happy when I see the positiveness of specialists and professionals who treat PW with an awareness that was very limited in days gone by.
But.
Today I saw a man with PWS whom I've known for many years. He'd be in his late 30s. His family chose to place him in 'supported living' and it was what he wanted if he wasn't allowed to live on his own. Supported living equates to a few hours a week when someone comes in to help him. Otherwise, he's on his own. He looked terrible. His skin was yellow, he was barefoot (it's winter here), he had severe conjunctivitis in one eye. He is way, way overweight and can barely shuffle along with a walking stick. I asked him how he was. He said "I'm ok after Mum's funeral on Monday". I had known his mother and I did not know she had died. I gave him a hug. My thoughts were - is this the real face, the forgotten face of PWS?
I thought about all the older generation who did not have the benefit of the early diagnosis that children have today, and how the parents struggled for recognition of this challenging syndrome. I thought about all tears we have shed over the years. At that moment I wanted recognition for the rivers we have cried: tears of frustration, sadness, despair, madness, self-pity, and yes happiness.
So these words are for you - parents, sisters, brothers, grandparents - we are in this together; we share a rare life but for all the pain, it is still a beautiful life. Take care of yourselves.
With love
