Re: RSS to Amy

[Guest guest]

Amy,

You and your mom should check out the MAGIC Foundation website to

learn more about RSS and its genetic basis. You can get to it by

going to www.magicfoundation.org. It IS a genetic syndrome, but the

cause is not known. In about 10% of the cases, the RSS person tests

positive for UPD7, a blood test that shows that at this marker both

sets of chromosomes came from the mother instead of the usual one

from mom and one from dad. For the rest, well, we don't know why

our kids have this.

Please tell us more about yourself. My son Max is also 17. He is

5'4 " and about 117 pounds. He's been on growth hormones since he

was just under 3 years old. I'm not sure I understood your height,

however, because you put 5 feet 18 inches, or something like that.

I don't remember now!

Did you know that there is a listserve for people with RSS? It is

called RSS People and can be accessed through Yahoo Groups, too. We

parents are not allowed on that list.

So, tell your mom that she is wrong about the umbilical chord

thing. You had RSS before you were even ready to be born. Why were

you just diagnosed? I hope you are feeling all right.

Jodi Z

[Guest guest]

Amy,

I understand your not wanting to participate in the RSSPeople

listserve. I've been trying to get Max to participated on it and he

does not want to, either. Maybe when you two are older? Right now

you both have enough to deal with and don't want to define

yourselves as only " people with RSS. " There are, I'm sure, many

other good qualities about you that you need to focus on for now.

You said that you have some physical problems? May I ask what they

are? Perhaps there are things that we can help you with.

Also, about the learning problems... That is not unusual for RSS,

either. While, like you, most RSS kids are of average to above

average intelligence, many experience learning

disabilities/difficulties. Some of this is linked to unknown

hypoglycemia as an infant. It is only within the past few years

that it has been recognized as an issue that must be dealt with for

our kids. We were lucky that we found it in Max before he was

diagnosed with RSS, but he had gone for 6 months with it untreated

and I shudder to think of what would have happened if we had not

found out. His was a pretty severe case.

Of course, the hypoglycemia is not the only reason for LD. I'm a

special ed teacher and if we could find out why so many kids have

LD, it would be so wonderful. But many times we just don't know.

Anyway, you sound like a lovely, intelligent young lady. It's great

to know that you are learning about RSS and discovering things on

your own. Keep up the good work and let us know if we can help

you. We are always here. Welcome to our very big family.

Jodi Z