Re: A Small Percentage?? It seems like the numbers are changing considerably!!!

[Guest guest]

We are hoping to begin some new research in the fall that will show us the

actual number of cases who truely have mosaic Down syndrome. You are right in

saying that the numbers are inaccurate, however, without research there is no

way to tell for sure!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.org

http://www.mosaicmoments.today.com

 

Subject: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Tuesday, June 24, 2008, 5:47 PM

I have noticed many, many families joining this group on a regular

basis. It does seem like a majority of the newbies either have children

under three, or are with a new diagnosis of MDS, or both. <br>

I must say that it does seem like more than the " rare " , low percentages

of 3-5% of cases of DS are coming up with diagnoses of MDS. <br> I

wonder when the textbooks will change? <br>

[Guest guest]

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

**************

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Kristy,

Yes, I see what you mean by this; however, the numbers will always be

inaccurate won't they?

<br>

Reason #1: Huge number of missed mosaics (misdiagnoses) <br>

Reason #2: Only those involved in the research will be counted, right?

<br>

I am sure there are more reasons, but these two were at the top of my

head. <br>

Just curious, how many families who join this group are actually

converts (originally Trisomy 21 diagnosis and now mosaic diagnosis)?

Do you have any stats on this? <br>

When I was on the Executive Board for DSAA, I did not see that many

new members. Actually, none that I can remember in the year that

served. I am not sure if everyone here is a member of IMDSA, but

it " does " seem like there is an alarming number of new cases joining

this forum, which is GREAT. Just curious...:0))) <br>

>

>

> Subject: A Small Percentage?? It seems like the numbers are

changing considerably!!!

> To: MosaicDS

> Date: Tuesday, June 24, 2008, 5:47 PM

>

>

>

>

>

>

> I have noticed many, many families joining this group on a regular

> basis. It does seem like a majority of the newbies either have

children

> under three, or are with a new diagnosis of MDS, or both. <br>

> I must say that it does seem like more than the " rare " , low

percentages

> of 3-5% of cases of DS are coming up with diagnoses of MDS. <br> I

> wonder when the textbooks will change? <br>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

We did a poll several months ago and asked families about how they received

their diagnosis. In addition to the online poll, I spoke with several families

on the phone and included them in our numbers. We polled 70 families and asked

them about their diagnosis. Out of those 70 families 15% had first been

diagnosed with Trisomy 21 Down syndrome through a blood test. Then, after a

second more accurate test, those families discovered the mosaicism.

 

Now, this is just our families and the number may be even higher or perhaps even

lower when we do our research. Yes, this will only show those families who we

research for the numbers, but it will give us a good idea on percentages of how

many are misdiagnosed.

 

And, as you say, there are many who are undiagnosed, so there is no way for us

to get a number for those undiagnosed since the obvious---they don't know they

have it!

 

Kristy

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Tuesday, June 24, 2008, 9:22 PM

Kristy,

Yes, I see what you mean by this; however, the numbers will always be

inaccurate won't they?

<br>

Reason #1: Huge number of missed mosaics (misdiagnoses) <br>

Reason #2: Only those involved in the research will be counted, right?

<br>

I am sure there are more reasons, but these two were at the top of my

head. <br>

Just curious, how many families who join this group are actually

converts (originally Trisomy 21 diagnosis and now mosaic diagnosis)?

Do you have any stats on this? <br>

When I was on the Executive Board for DSAA, I did not see that many

new members. Actually, none that I can remember in the year that

served. I am not sure if everyone here is a member of IMDSA, but

it " does " seem like there is an alarming number of new cases joining

this forum, which is GREAT. Just curious...:0) )) <br>

>

> From: <agirlnamedsuess@ ...>

> Subject: A Small Percentage?? It seems like the numbers are

changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 5:47 PM

>

>

>

>

>

>

> I have noticed many, many families joining this group on a regular

> basis. It does seem like a majority of the newbies either have

children

> under three, or are with a new diagnosis of MDS, or both. <br>

> I must say that it does seem like more than the " rare " , low

percentages

> of 3-5% of cases of DS are coming up with diagnoses of MDS. <br> I

> wonder when the textbooks will change? <br>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

LOL Well, I don't think they will do that at NDSC, but we will probably be doing

it at our conference again!!!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.org

http://www.mosaicmoments.today.com

 

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Tuesday, June 24, 2008, 10:30 PM

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

************ **

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

[Guest guest]

How is the test done? Is it free or do they go thru our insurance? I would

like my daughter to be retested to put my mind at ease and be able to say for

sure if she has DS or MDS.

Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Tuesday, June 24, 2008, 10:30 PM

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

************ **

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

[Guest guest]

During our conference we invite researchers to come and conduct their research

on site. This enables them to collect their data all in one place at one time.

Since MDS is rare, this encourages researchers to do their studies because we

are providing them with plenty of subjects!

 

We are not yet positive that we will be able to take samples at this conference,

but it is something we are working on right now. The testing would not cost you

anything because it is research.

Kristy

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.org

http://www.mosaicmoments.today.com

 

From: jhockelaol (DOT) com <jhockelaol (DOT) com>

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

To: MosaicDS@yahoogroup s.com

Date: Tuesday, June 24, 2008, 10:30 PM

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

************ **

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

[Guest guest]

And where is the next conference going to be? Did you say OHIO?

>

> From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> Subject: Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Yes , Cinncinati July 10-12 2009

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@...

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Yes, our conference is in Cincinnati Ohio on July 10-12, 2009!

Also, if anyone is wanting to go, but is worried about the cost of travel, just

email Becky Rowe at and let her know. She will help you

get the funds to attend the conference.

 

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.org

http://www.mosaicmoments.today.com

 

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Wednesday, June 25, 2008, 8:31 AM

And where is the next conference going to be? Did you say OHIO?

>

> From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> Subject: Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Yeah, for those of us who live in " Cincinnati, KY " that's gonna be GREAT! LOL!

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of

Sent: Wed 6/25/2008 9:31 AM

To: MosaicDS

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

And where is the next conference going to be? Did you say OHIO?

>

> From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> Subject: Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. <http://autos./> aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Yeah, yeah yeah...bragging rights on this conference are NOT necessary LOL

But we could do awards for longest and shortest distance traveled, least and

most amount of children, etc. LOL

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@...

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. <http://autos. /> aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Oh, THAT's a cool idea! :-) If I were still in my old house, I'd DEFINITELY

get the award for shortest distance -- only a few miles! My new house is about

20 minutes away, though! Hey, after last year's whirlwind weekend tour,

arriving home at 2:00A.M. and working on Monday morning, I DESERVE a short

distance this year! :-)

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of Becky Rowe

Sent: Wed 6/25/2008 10:18 AM

To: MosaicDS

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

Yeah, yeah yeah...bragging rights on this conference are NOT necessary LOL

But we could do awards for longest and shortest distance traveled, least and

most amount of children, etc. LOL

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@... <mailto:rdrsfan31%40yahoo.com>

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. <http://autos./> <http://autos. <http://autos./> />

aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

I absolutely agree with you on that LOL

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@...

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. <http://autos. /> <http://autos. <http://autos. /> />

aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Cool...I would love to come and get the testing done for my daughter. At least

they would check enough cells to find out for sure.

Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

To: MosaicDS@yahoogroup s.com

Date: Tuesday, June 24, 2008, 10:30 PM

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

************ **

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

[Guest guest]

Not only that, but you also would have a fantastic weekend learning all there is

to know about Down syndrome and mosaic Down syndrome! We are planning a

fantastic list of speakers to talk about all topics pertaining to Down syndrome

(no matter what kind) and they will be addressing issues for the newborn all the

way up to adult!

 

We have a great time at our conference and so do all the kids with our Kid

Konference and the teens and young adults with our Youth Conference!

 

I promise that no one would be disappointed by attending! Everyone has a great

time!!!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

www.imdsa.org

http://www.mosaicmoments.today.com

 

From: jhockelaol (DOT) com <jhockelaol (DOT) com>

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

To: MosaicDS@yahoogroup s.com

Date: Tuesday, June 24, 2008, 10:30 PM

How I wish someone could set up a booth at the NDSC convention and offer free

reliable karyotypes!

Judie, mom to Christi, 29 , and lots more

************ **

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

[Guest guest]

Hi Kristy, Do yall have this conference every year. I would love to

attend but just dont see how I could pull it off. I live in NC so I

would have to fly in. Also am I right in understanding I can bring

Hailey with me? Will there be child care while Im in the conference?

I would need more time to plan attending. It is my wishes that yall

will have another one at a later date and hopefully I could come to

that one.

>

> From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> Subject: Re: A Small Percentage?? It seems like the numbers

are changing considerably! !!

> To: MosaicDS@yahoogroup s.com

> Date: Tuesday, June 24, 2008, 10:30 PM

>

> How I wish someone could set up a booth at the NDSC convention and

offer free

> reliable karyotypes!

>

> Judie, mom to Christi, 29 , and lots more

>

> ************ **

> Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

> (http://autos. aol.com/used? ncid=aolaut00050 000000007)

>

>

[Guest guest]

Becky -

In the past, it has been more like every other year. We had one in VA

(2004); Then one in Texas (2005), Then VA again (2007) - now Ohio (2009)

Darlene

> Hi Kristy, Do yall have this conference every year. I would love to

> attend but just dont see how I could pull it off. I live in NC so I

> would have to fly in. Also am I right in understanding I can bring

> Hailey with me? Will there be child care while Im in the conference?

> I would need more time to plan attending. It is my wishes that yall

> will have another one at a later date and hopefully I could come to

> that one.

>

>

> >

> > From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> > Subject: Re: A Small Percentage?? It seems like the numbers

> are changing considerably! !!

> > To: MosaicDS@yahoogroup s.com

> > Date: Tuesday, June 24, 2008, 10:30 PM

> >

> > How I wish someone could set up a booth at the NDSC convention and

> offer free

> > reliable karyotypes!

> >

> > Judie, mom to Christi, 29 , and lots more

> >

> > ************ **

> > Gas prices getting you down? Search AOL Autos for

> > fuel-efficient used cars.

> > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> >

> >

[Guest guest]

I thought this years was gonna be in Ohio in july. Was I wrong about

that. When is the date of the conference.

> > >

> > > From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> > > Subject: Re: A Small Percentage?? It seems like the

numbers

> > are changing considerably! !!

> > > To: MosaicDS@yahoogroup s.com

> > > Date: Tuesday, June 24, 2008, 10:30 PM

> > >

> > > How I wish someone could set up a booth at the NDSC convention

and

> > offer free

> > > reliable karyotypes!

> > >

> > > Judie, mom to Christi, 29 , and lots more

> > >

> > > ************ **

> > > Gas prices getting you down? Search AOL Autos for

> > > fuel-efficient used cars.

> > > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> > >

> > >

[Guest guest]

July 2009 - the web site will have the exact dates.

Darlene

> I thought this years was gonna be in Ohio in july. Was I wrong about

> that. When is the date of the conference.

>

>

> > > >

> > > > From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> > > > Subject: Re: A Small Percentage?? It seems like the

> numbers

> > > are changing considerably! !!

> > > > To: MosaicDS@yahoogroup s.com

> > > > Date: Tuesday, June 24, 2008, 10:30 PM

> > > >

> > > > How I wish someone could set up a booth at the NDSC convention

> and

> > > offer free

> > > > reliable karyotypes!

> > > >

> > > > Judie, mom to Christi, 29 , and lots more

> > > >

> > > > ************ **

> > > > Gas prices getting you down? Search AOL Autos for

> > > > fuel-efficient used cars.

> > > > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> > > >

> > > >

[Guest guest]

Im slow but I do catch on lol. I wrote it on my calendar. Im gonna

try really hard to come. I would love to have Hailey tested and have

a chance to meet everyone. Im a little scared to get out of my

comfort zone...guess Ill just have to get over that. It would just be

a little scary. lol As you can see I dont get out much. & #65007; & #65007;

& #65007; & #65007; & #65007; & #65007;

> > > > > & #65007; & #65007;

> > > > > From: jhockelaol (DOT) com <jhockelaol (DOT) com> & #65007; & #65007;

> > > > > Subject: Re: A Small Percentage?? It seems like

the & #65007; & #65007;

> > numbers & #65007; & #65007;

> > > > are changing considerably! !! & #65007; & #65007;

> > > > > To: MosaicDS@yahoogroup s.com & #65007; & #65007;

> > > > > Date: Tuesday, June 24, 2008, 10:30 PM & #65007; & #65007;

> > > > > & #65007; & #65007;

> > > > > How I wish someone could set up a booth at the NDSC

convention & #65007; & #65007;

> > and & #65007; & #65007;

> > > > offer free & #65007; & #65007;

> > > > > reliable karyotypes! & #65007; & #65007;

> > > > > & #65007; & #65007;

> > > > > Judie, mom to Christi, 29 , and lots more & #65007; & #65007;

> > > > > & #65007; & #65007;

> > > > > ************ ** & #65007; & #65007;

> > > > > Gas prices getting you down? Search AOL Autos for & #65007; & #65007;

> > > > > fuel-efficient used cars. & #65007; & #65007;

> > > > > (http://autos. aol.com/used? ncid=aolaut00050

000000007) & #65007; & #65007;

> > > > > & #65007; & #65007;

> > > > >

[Guest guest]

I am catching up on messages and just read the posts on this. I agree

that the numbers are most likely changing and increasing. There are for

sure a lot of individuals who are misdiagnosed. In fact, my daughter

Sydney was misdiagnosed at first. I found out about her diagnosis

through an amnio. The result was positive but they stated that not all

of the cells studied contained the extra chromosome 21. They explained

this as some the extra 21st chromosome must have some how gotten " lost "

during the testing on the " normal " cells. It was all so confusing and I

always knew for sure that something was not right and that she may

actually have MDS instead. After birth they basically refused to order

genetic blood testing for her. We fired the pediatrician! Our new

pediatrician referred us to a genetics doc. she was finally tested at

about 13 months and it was confirmed that she is Mosaic at about 14%. I

am sure there are many more stories like ours out there.

The conference sounds like a lot of fun. We are gonna try hard to make

it. This support group has really been helpful to me. Thanks to all of

your posts. I am truly grateful for this source.

[Guest guest]

Hi Carmen,

    Would you mind sharing with me where you live?  I am Becky Rowe's mom living

in Arizona.  I have a friend who lives in California and her name is Carmen

Naylor.  I am just curious if you are her.  I know my friend Carmen has quite a

few children but I do not know her enough to know if she has had any children

with MDS.  All her children are grown.  It would be amazing if you are in fact

my friend from YCC which stands for Yucaipa Christian Church.  TTFN  Rowe

Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

I am catching up on messages and just read the posts on this. I agree

that the numbers are most likely changing and increasing. There are for

sure a lot of individuals who are misdiagnosed. In fact, my daughter

Sydney was misdiagnosed at first. I found out about her diagnosis

through an amnio. The result was positive but they stated that not all

of the cells studied contained the extra chromosome 21. They explained

this as some the extra 21st chromosome must have some how gotten " lost "

during the testing on the " normal " cells. It was all so confusing and I

always knew for sure that something was not right and that she may

actually have MDS instead. After birth they basically refused to order

genetic blood testing for her. We fired the pediatrician! Our new

pediatrician referred us to a genetics doc. she was finally tested at

about 13 months and it was confirmed that she is Mosaic at about 14%. I

am sure there are many more stories like ours out there.

The conference sounds like a lot of fun. We are gonna try hard to make

it. This support group has really been helpful to me. Thanks to all of

your posts. I am truly grateful for this source.

[Guest guest]

I think it's just like any other disorder that gets " discovered. " The more

people who know about it start to recognize the symptoms or characteristics and

it gets diagnosed more. I'd say there aren't any more people in the world with

MDS today than there were 50 years ago. It's just being diagnosed more now

because of the awareness. Plus, it's not a " shame " to have a family member with

a disability anymore, so children who are born with a disability are no longer

" hidden " and we actually see them in the general population now. The same is

true with Autism. I don't think Autism is so much on the rise as it is just

being diagnosed more often now than it was even 20 years ago.

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of Carmen Naylor

Sent: Thu 6/26/2008 10:25 AM

To: MosaicDS

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

I am catching up on messages and just read the posts on this. I agree

that the numbers are most likely changing and increasing. There are for

sure a lot of individuals who are misdiagnosed. In fact, my daughter

Sydney was misdiagnosed at first. I found out about her diagnosis

through an amnio. The result was positive but they stated that not all

of the cells studied contained the extra chromosome 21. They explained

this as some the extra 21st chromosome must have some how gotten " lost "

during the testing on the " normal " cells. It was all so confusing and I

always knew for sure that something was not right and that she may

actually have MDS instead. After birth they basically refused to order

genetic blood testing for her. We fired the pediatrician! Our new

pediatrician referred us to a genetics doc. she was finally tested at

about 13 months and it was confirmed that she is Mosaic at about 14%. I

am sure there are many more stories like ours out there.

The conference sounds like a lot of fun. We are gonna try hard to make

it. This support group has really been helpful to me. Thanks to all of

your posts. I am truly grateful for this source.

[Guest guest]

Hi ..I live in andria Virginia. I am originally from New York.

I have never lived in California. But I am truly amazed at your story.

I am surprised to know that there is another Carmen Naylor out there.

That is pretty interesting news. My daughter Sydney is my only child

and she is 19 months old. Nice to meet you.

>

> Hi Carmen,

>     Would you mind sharing with me where you live?  I am Becky Rowe's

mom living in Arizona.  I have a friend who lives in California and her

name is Carmen Naylor.  I am just curious if you are her.  I know my

friend Carmen has quite a few children but I do not know her enough to

know if she has had any children with MDS.  All her children are

grown.  It would be amazing if you are in fact my friend from YCC which

stands for Yucaipa Christian Church.  TTFN  Rowe

>

>

>

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