Time to BLOG
I have been thinking of how to use this page as I have just not been happy with myself and how I have been slacking.
Let me start off by saying that I am spurred on because I see so many of my friends from the “Island of P.W.S.” posting awareness information on their pages and I must be honest it has hurt me. Don’t get me wrong...I am happy that they are fighting to raise awareness! I have a great many friends that I relate to in that community. But the thing that hurts is again that THIS island...OUR island is so VERY small with only a few people. We have 5 children with POMC between us and there are just 5 adults sharing bits of our lives with one another just trying to keep afloat and alive. It is better than it was just five years back when I was totally ALONE IN THE WORLD. But the pain is still raw so I beg that you please bear with me and grant me some grace.
I do not wallow in my grief normally. ...sometimes it hits me suddenly and I acknowledge it and give it the proper validation then I try to weather my storm. Sometimes it is just the push needed to get me motivated.
So, this is the beginning of my own version of a 'Blog'
Today I had a chance to sit and read as well as listen to a link one of my friends shared, It was the post about POMC in Labradors. Over the past few years I have had a couple of friends share links about POMC and I am so thankful that they think of me! Well, on this link there was also an audio clip so I listened to it as Nate was having his lunch.....I was nice to hear the geneticist’s voice I like different accents.He is from Cambridge in England so he was pleasant to hear and clear in his speech.
Then there it was...the stab in the heart...he was asked how rare is POMC in humans? His answer...It is very rare... possibly 10.. in the world.
Oh, I KNOW of 12 right off the top of my head. we have the 5 kids and one dad...and I know there are 2 cases in Canada and at least 3 in Germany and 1 somewhere in Mexico that makes 12....
I see this as Bitter Sweet...1) I know of more POMC patients than a doctor doing research on the subject. 2) that is a horribly low number. Many of the scientific studies I have read have shown possibly 20-50 patients but..... some may no longer be with us.
Well...enough for today.
The rainstorms have passed and the sun is out, Nate thinks we need to go swimming before bedtime and I concur!
Comments
Post a Comment