RE: What do you all think?

[Guest guest]

Hi Sandy,

I think my family has something also. My sister looks Oriental. My

daughter has mds(20%).I have some physical chararistics of d

[Guest guest]

Sandy,

my laptop is freezing up. I need a new one! IM having award time

writing mesages.I have a simalar situation please call .

[Guest guest]

Sandy, my condolences on the loss of your daughter. May the memory of who

she was, and how much she was loved offer some comfort as you grieve. My son,

who turns 18 this summer, tests to have 30% of his blood cells affected. He is

set to receive a high school diploma and go to college with some support. As a

matter of fact, he is leaving for a 6 week trip to Israel this summer with

the synagogue youth group. He is by no means as high functioning as you, as it

is obvious on getting to know him that he has some difficulties and challenges

in life. You are a successful adult, married and ready to have a family. I

would encourage you and your family to get testing so that you know what you

are dealing with. There are implications to finding out, but better to know

what ghosts you must face. My thoughts are with you and your family during this

difficult time.

Sharon Kaye, parent to Mark age 17, age 14, Zack age 11 and an

Occupational Therapist

[Guest guest]

Sandy -

All things are potentially a hereditary thing - for example - I have

crooked pinkies, and a very small mouth. And those things are signs of

DS -> however they are also signs of being human. I have very close set

eyes (like a child) but my husband had very far set eyes (probably

because he is very tall). A blood test is not the only way to determine

if you have MDS, a cheek swab will also determine it. With MDS, because

it is mosaic each item in the body may have a different makeup so the

cheek swab which tests the skin may have a different result than the

blood test which tests the blood.

But mostly I look at MDS as a fluke - Just like DS. My mother insists

that DS does not run in our family and it doesn't - It just happens to 1

out of every 1000 people. And MDS happens to 1 - 2 % of those. It is

just luck of the draw sometimes everything goes right and the cells all

divide like they are supposed to and sometimes other things happen (when

very bad things happen - usually the fetus does not make it to being

born).

Also give your sister some space and time - hearing that there might be

something wrong with your child is very disconcerting and she will come

to it in her own terms. Even if she does not get her child tested that

is her decision and your nieces in her older years.

Darlene - Mom to (7) and (5)

" Those who say it can't be done are usually interrupted by those doing

it. The human spirit can overcome ANY obstacle in the way of a dream. "

What do you all think?

Hi everyone, I post very rarely, but am hoping you might be able to

offer some advice. I am 28 years old and discovered when I commenced

fertility treatment (through blood chromosome testing) that I have

??mild MDS. I only have 2 out of 50 cells affected, have had no

developmental problems and no physical characteristics. I have since

gone onto have a daughter (who has since sadly died) she was tested and

had no chromosome abnormalities. I had genetic counselling when I was

pg and was advised that this could potential be a heriditary thing. Has

anyone heard of this being possible? The reason I ask is that my niece

(who is 32 months old) has some of the physical traits (far set eyes, no

nasal bridge) and has now been diagnosed with speech and developmental

problems. I have attached a picture, one is with her infant sister who

dosen't appear to have these traits. My sister does have far set eys

(but not this much) hoping pics will attach

I have advised my sister to get her daughter tested (but she is

reluctant) so I was hoping for any advice at all, also is a blood test

the only/best way of determining MDS?

Thanks in advance

Sandy