explaining Silver Syndrome

[Guest guest]

What do you all say when you tell people the name of the syndrome your

children has. In Lindsey's case she looks very dainty and petite but not

abnormally small.

How do you explain it? Just a growth disorder?

Jennie

[Guest guest]

That is exactly what I say: Max has a growth disorder. When he was

younger and had the pump and was so skinny, I even went on to say

that he has a very small appetite as a result, but that we had hopes

that he would continue to grow and learn to eat better. Most people

are satisfied if you give them some sort of explanation or label

that they can understand. I don't think it is anyone's business to

ask too many questions or get too personal.

Jodi

[Guest guest]

I know there are some posts from a year or so ago on this, but can't

recall when.

We explain based on factors:

For example, if it is a casual conversation, and a quick one, we

simply say " has a growth disorder so that she has difficulty

gaining weight and growing. "

If the person is interested and asks questions, we don't hesitate to

explain what Silver Syndrome is. My husband, however, asked

me to STOP saying that it is a dwarfism syndrome (which it is, RSS is

part of the primordial dwarfism category) because he felt that most

people picture " dwarfism " as achrondroplasia, which is just one, the

most stereotypical, types of dwarfism. He wants me to just say it is

a genetic growth disorder.

> What do you all say when you tell people the name of the syndrome

your

> children has. In Lindsey's case she looks very dainty and petite

but not

> abnormally small.

> How do you explain it? Just a growth disorder?

>

>

> Jennie

>

>

>

[Guest guest]

I know there are some posts from a year or so ago on this, but can't

recall when.

We explain based on factors:

For example, if it is a casual conversation, and a quick one, we

simply say " has a growth disorder so that she has difficulty

gaining weight and growing. "

If the person is interested and asks questions, we don't hesitate to

explain what Silver Syndrome is. My husband, however, asked

me to STOP saying that it is a dwarfism syndrome (which it is, RSS is

part of the primordial dwarfism category) because he felt that most

people picture " dwarfism " as achrondroplasia, which is just one, the

most stereotypical, types of dwarfism. He wants me to just say it is

a genetic growth disorder.

> What do you all say when you tell people the name of the syndrome

your

> children has. In Lindsey's case she looks very dainty and petite

but not

> abnormally small.

> How do you explain it? Just a growth disorder?

>

>

> Jennie

>

>

>