Q. Can my children get sick with Pompe also?
A. ONLY if their father is a carrier too. HIGHLY unlikely but not impossible, but he will get tested to be sure.
There is currently talk about the fact that "carriers" can exhibit the same symptoms as those who actually have pompe. But the symptoms are much milder.
Q. Will my children be carriers?
A. Yes, absolutely, no doubt they will be a carrier for Pompe.
Q. Can they pass the gene onto their children?
A. Yes they can, but it won't necessarily happen.
Q. How can I help myself?
A. Surround yourself with people who are in the same boat and know what they are talking about.
- Surround yourself with POSITIVE people!! I cannot emphasise that enough!
- If your support people suck, ditch them and find someone new who gives a damn! They're out there! We're out here! Contact us, we DO give a damn! We KNOW exactly what it's like!
- BE YOUR OWN ADVOCATE! No one will know what on earth Pompe Disease is! Your GP won't know, your family won't know, no one will know. Research it! GOOGLE it! Talk to people who have it, ask people about it, push for help, push push push. Ask ask ask. If the people you ask can't answer your questions, ask someone else!
- Contact the Muscular Dystrophy Association.
I didn't do this at first, but when I finally did I wished I had done it right from the start. They are a fabulous organisation. I cannot thank them enough for the wonderful support they have given to us.
Someone asked me today how MDA has helped. I couldn't really find the words right at that moment. But given time to think about how to answer, the words are...they help you to figure out who to talk to, who can best help you. They don't boss you around and tell you what to do. They listen to you, I mean REALLY listen. They know the right people to contact and will act as a liason between you and them. They can suggest things to help you that you would never have thought of, because let's face it, we probably haven't been around this track before, but they know all of the ins and outs of how things work. They are passionate and good people, and I really mean that in the truest sense of those words. Anyone who knows me knows that I always say what I mean, and I really mean that they are passionate and good people!
They can also put you in touch with other people with the same disease, or with similar issues. Lots of us with different diseases have very similar issues.
Things I love:
My wonderful family!
My gorgeous friends!
- (singing is REALLY good for your lung function!)
High heeled shoes
Cats - particularly Persian Chinchillas
White wine, sparkly or still, surprise me!
Sewing, particularly quilting
Miniature Horses - Check out our website
Half Pints Miniature Horses - I'm all for shameless advertising ;o)
Florida Gators of course!!!