Project for all

[Guest guest]

Name three things you can't do because of EDS

1. I can't work with my beloved horses or play sports anymore.

2. I can't be as independent, free and impulsive as my spirit longs

to be.

3. I can't do anything without careful planning, organisation or

phyiscal and emotional help.

Name three things that have positively changed your life because of

EDS

1. I have seen the very best of human nature and people's immense

kindness.

2. I have gained a new perspective to life and found new goals.

3. I have a greater appreciation for the small, beautiful things in

the world that I would have missed previously.

Thanks for this idea Jill :-)

Love...Jo

x

[Guest guest]

Name three things you can't do because of EDS

1. I can't perform Taekwondo, which I loved to do

2. I can't do sleep well due to the looseness and especially due to spinal

stenosis lately

3. I can work, but not real effectively, and I miss a lot of days - always

use almost all of my sick leave

Name three things that have positively changed your life because of EDS

1. I have gained many family members - and I mean that literally! I LOVE

THEM! :-)

2. I respect the disabled a lot more and understand what they went through

to receive it - sort of (I've never been through it myself)

3. I try a lot harder to help others and to help my kids understand what

this condition is and what they could expect in the future. Knowledge is

power.

Love Lana

[Guest guest]

Name three things you can't do because of EDS

1. I can't play sports anymore

2. I can't seem to get healthy, every time I'm getting on track with my

weight/health, something else happens or I have another bad flare-up taking me

right back to were I started.

3. I can't work for more than a couple of hours.

Name three things that have positively changed your life because of EDS

1. I have found a purpose, to show others that they have to keep fighting and

trying to accomplish their goals no matter what curve balls are throw at you.

2. I have an opportunity to help people with controllable problems and realize

that they should embrace life and be grateful for what they have been given

instead of abusing good fortune/health.

3. I am aware of the challenges that different people are faced with every day

and now have the ability to picture how life is different for everyone no matter

what kind of disability they have.

Onale

[Guest guest]

> Name three things you can't do because of EDS

> 1. I can't do the sports and activites I would like to do

> 2. I have to try to plan ahead but also leave an out incase I am

simply not up to it.

> 3. I can't work, or return to work in the same capacity.

> Name three things that have positively changed your life because of

EDS

> 1. CEDA and the people I have met due to my health issues

(including my friends from the local pain clinic and here)

> 2. I have a much greater respect for those who are different (I

always did but now that I am disabled I have even more)

> 3. having EDS has helped me to be more open and outgoing (strange

but true) as now that I have a name for WHY I am like I am and other

can see I have issues (some of the time) I find that I talk to

strangers more and as a LOT of people come up to me because of having

Boo (my SD/IT)this is a good thing, I also now stand up for myself

instead of letting others walk all over me.

>What a GREAT idea Jill

Sharon

[Guest guest]

Name three things you can't do because of EDS

1. Experience that overwhelming joy and pride in watching my son,

's numerous milestones that would happened in his life. But,

especially this year, as he would of Graduated from college, along

with his sister, from High School .

2. I can't touch my son, give him a hug or a kiss, or dance with him - I

can't be in his physical presences, to see him, talk with him, share

our familiar jokes and laughter, see him smile, hear his voice, or

hear him say, " That he loves me " .

3. I can't be the old Cathy or mom before, as she died with Dave.

Can't bring my son back, Can't ever be a family of 4 again, Can't truly

be happy again, as there is always a deep profound sadness, that's

always just under the surface - my world before, was in color, now it's

in shades of black and white...

Name three things that have positively changed your life because of EDS

1. I have " NO FEAR " , to speak in front of a room full of people, to fly, to

speak up for myself or other's, or even death. Grief forced me to

acquire

a deep wisdom, and a profound sense of empathy for those who suffer.

2. Meeting so many wonderful EDSers and their families from all over the

world. Many have touched my life so profoundly, that there are no words

to describe those experiences - like true angels that came at just the

right time. Because of them, I'm my blessed....

3. It has become my life's mission to be an advocate for all those afflicted

with EDS. If I can make a difference in some way, that would bring

enormous benefits to all - for appropriate care, treatment, or even a

cure - then it would have be worth all the anguish I endured over

losing my beloved son.

Sincerely,

Cathy Bowen, D.D.B.III - President

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

Southern New Jersey Branch-

Ehlers-Danlos National Foundation

Mays Landing, NJ 08330

E-mail: SJ-EDS-DAVID-MOM@...

website: http://www.aclink.org/eds

http://www.ednf.org

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

Associate Publisher, EDS Today

The Newsletter for, by, and about people

with Ehlers Danlos Syndrome.

http://www.edstoday.org/

EDS Today is a 501©3 non-profit organization.

Help EDS Today by shopping online through IGive at

http://www.igive.com/html/brand.cfm?b=2251

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

In Loving Memory of my son,

http://pages.prodigy.net/sj-eds-david-mom/index.html

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

They that " LOVE " beyond the world cannot be separated by it.

" DEATH " cannot " KILL " what " NEVER " dies... Penn