Re: Who we all are.....

[Guest guest]

Hello everyone,

I am . I am older than I like to admit to and older than I

usually act but will confess that I am 48. I tried to say that in a whisper

but it didn't work. At NIH they argued over whether it was classical or

hypermobile but feel like I'm probably hypermoble along my younger daughter,

Sara, 17 who is a senior in high school this year. We live in Richmond ,

Virginia, I have a husband Mike, another daughter (19)and a dog,

Charlie. I also have migraines, assorted gi " stuff " , POTS, fibromyalgia, TMJ,

and other " stuff " I can't remember and am glad I can't!!! I'm glad that I

know and have each and everyone of you guys as friends to laugh and cry with!

hugs,

[Guest guest]

Waving back to Jeff... miss ya son!!! hehehehe

; o )

OK.. I am Debby Keenan (42) and live in New Jersey. I have 4 daughters

Chery - 18, - 11 1/2, - 9 & - 6. All of us have

CEDS with vascular overlays.... Ya, it is very exciting around here..

9 days into the school year fell on the school ground and

fractured her wrist..AGAIN... she just went into the teacher after lunch

and said.. I have to go to the nurse I broke my wrist again,..lol..

KIDS!!!!

Anyway, there is NEVER a dull moment around here with EDS.. stomach

problems.. colon problems... reflux problems... CFS... dislocations...

breaks... fractures.... brusing.... gum surgeriies... female problems...

we have it all in various forms... but we hang tough..

Tomorrow I go about my darn ankle.... guess I'm not 'walking this one

off' hehehe

I'll let you know how I make out Val!

hugs and his to all the newcomers!!!!!!!

: o )

debby

[Guest guest]

Hi Jill,

I'm too lazy to type my bio, so I'll just repost the one I saved on the site

at http://groups.yahoo.com/group/ceda/files/Personal%20Bios/

Name: Barbara J. Uggen-

Birthday: Sept 20, 1971. Yes - I just turned 30!

Current Residence: Seattle, Washington, USA

Diagnosis/Disability: Ehlers-Danlos Syndrome Hypermobile type (formerly

type III) and Orthostatic Hypotension

Age at diagnosis: 21

Marital Status: Married to Kerry . Kerry also has Hypermobile type

EDS. We met at an EDNF conference in 1994.

Education: BA Business Management/Accounting from the University of

Washington. It took me 12 years to finish because I worked full-time and

had to change majors half way through. (I was originally a theater and

dance major).

Occupation: Office Manager/Web Designer for LP Supports

www.lp-support.com. I also have my own web design business

www.uggen.net.

Volunteer Positions: Editor of EDS Today, the magazine for, by, and about

people with Ehlers Danlos Syndrome, www.uggen.net/edstoday/. Secretary,

DAHRT (Disabled Americans Have Rights Too) www.dahrt.org. Web

designer and volunteer for Refugee Women's Alliance www.rewa.org.

Hobbies and Interests: web design, reading, theater and dance, fishing,

camping, writing, and disability activism.

Personal Web-Site: www.uggen.net/personal/bunny.htm

Current Projects: EDS Awareness Campaign, Feb 2002. Campaign Treasurer

for Citizens for Kerry (for Federal Way Fire Commissioner)

www.kerrydavis.com. Training my Siberian Husky/German Shepherd,

Sherlock www.uggen.net/personal/sherlock.htm to be a service dog at

Paws-Abilities www.everydoghas.com

-Barb

[Guest guest]

Hi to all the Newbies,

My name is Ginley, I am 35yrs. old, and have the vascular type of EDS.

I am married with three children--a miracle in and off itself, but they don't

stop there. Have survived many arterial dissections, and intestinal

problems, and seem to be in somewhat of a " calm " period--<crossing my fingers

behind my back> . Must be all those nutritional supplements I take or is

it the medication I am on?--enough to kill an elephant--but not a VEDSers

with a very, very strong and stubborn constitution.

I am also a registered nurse, and nutritionist, and always here to answer

questions--although I admit with EDS there are always so many unanswerable.

I am also the moderator for the VEDS list through yahoogroups.com, and

working on a webpage featuring medical journal articles on VEDS and

EDS--severe complications. Basically a quick resource webpage, that may help

docs., students, nurses, and those of us with VEDS/EDS get quick information

in an emergency. Will also be featuring memorials of those who have lost

their lives to EDS--if anyone sends me any. I think this is just a very

difficult subject and people don't want to respond, but will feature anyone

who wants their loved ones linked, or featured.

Well, that's about it--hope this finds you all feeling well, and not in too

much pain.

Love, Sue Ginley

~Life is tough, but I'm tougher~

[Guest guest]

Hello,

I am the mom of 2 daughters 8 and 4 diagnosed with EDS III. My oldest child

has severe orthopedic issues and wears braces on her legs due to constant

dislocations. My 4 yr old only does her fingers and wrists thus far. My

husband has it and has lots of pain because we didn't have any diagnosis

until 2 yrs ago when my 8 yr old startde idslocating.

Laure

[Guest guest]

Greetings, Newbies!

I'm Louise, mid-divorce --but I guess you know that already. I was diagnosed

with HEDS last year --guess you know that, too. I'm a musician, made a CD

for people in recovery or living with chronic illness --but I tell

*everybody* that given half a chance...LOL...

I would really like to hear all about *you*!

big huge (but gentle) welcoming hugs to the Newbies!!

Louise

[Guest guest]

Hi,

I'm Doris Sundberg, I have Hypermobile EDS and GI and other things going

on...too numerous to count, but sure they will come up on the list...

I'm 63 (where did the time go?) and I live in Albuquerque, NEw Mexico...in

the desert...and everyone from the midwest has moved here and brought their

yards with them so now it's the QUEEN OF ALLERGY CITY! I moved here from

Duluth, MInnesota in 1972, Christmas Eve...I was born in West Allis,

Wisconsin...Milwaukee, down by the grain elevators...

My youngest child has a whole lot of problems with Hypermobile EDS. I'm not

sure how the others are affected...they never would even check it out..

My mother had it, and so did my oldest sister and so does my next

sister..don't know about my brothers..

My oldest sister and I went to s Hopkins in 1985 to confirm what had

already been diagnosed in 1977 by the ortho who had seen all of us...and I

mean, my mom, my sis, my son and myself..that was what gave him the clues he

needed.

My sister and I were used in the teaching clinic at s Hopkins....for a

couple of hours. That felt strange to be in hospital gowns walking up and

down steps and bending joints for a class of about twenty docs...but they

were very interested because we were sisters.

Blessings, Doris

Re: Who we all are.....

> Hello everyone,

> I am . I am older than I like to admit to and older than I

> usually act but will confess that I am 48. I tried to say that in a

whisper

> but it didn't work. At NIH they argued over whether it was classical or

> hypermobile but feel like I'm probably hypermoble along my younger

daughter,

> Sara, 17 who is a senior in high school this year. We live in Richmond ,

> Virginia, I have a husband Mike, another daughter (19)and a dog,

> Charlie. I also have migraines, assorted gi " stuff " , POTS, fibromyalgia,

TMJ,

> and other " stuff " I can't remember and am glad I can't!!! I'm glad that I

> know and have each and everyone of you guys as friends to laugh and cry

with!

> hugs,

>

>

>

>

[Guest guest]

Barb,

When I read your bio about meeting Kerry at an EDNF Conference, it brought

to mind a call I received from my sister this weekend. She was at a ladies

get together at a neighbors home. Her son is dating (Kelli's) hostess

daughter (both 16). My sister overheard a conversation, about Kelli's hubby

having to put pillows under his lower arms so his shoulders don't dislocate.

My sister popped in and added that her sister(me) has EDS-(she does too but

very mild). Kelli was amazed that not only did someone know what it was, but

has it in the family.) Needless to say he's run the route that most all of

us have-hypochondriac, you need to learn to live with it, it's *just * a

disorder of the skin, ad nauseum.

They want any and all info that they can get their hands on, as the 16 y/o

dau. does not want to give up sports, and needs something to actually read

to know what can happens when joints are over stressed.

It's amazing what over hearing a conversation can bring about~

At least my nephew isn't bothered by her having it-he's been around me, and

it's a natural thing that his girlfriend is propped together at times! LOL

Sorry this is so long-but neat things do happen for some EDS people.

cindy

Subject: Re: Who we all are.....

Hi Jill,

>

> I'm too lazy to type my bio, so I'll just repost the one I saved on the

site

> at http://groups.yahoo.com/group/ceda/files/Personal%20Bios/

>

> Name: Barbara J. Uggen-

>

> Birthday: Sept 20, 1971. Yes - I just turned 30!

>

> Current Residence: Seattle, Washington, USA

>

> Diagnosis/Disability: Ehlers-Danlos Syndrome Hypermobile type (formerly

> type III) and Orthostatic Hypotension

>

> Age at diagnosis: 21

>

> Marital Status: Married to Kerry . Kerry also has Hypermobile type

> EDS. We met at an EDNF conference in 1994.

>

> Education: BA Business Management/Accounting from the University of

> Washington. It took me 12 years to finish because I worked full-time and

> had to change majors half way through. (I was originally a theater and

> dance major).

>

> Occupation: Office Manager/Web Designer for LP Supports>

www.lp-support.com. I also have my own web design business> www.uggen.net.

>

> Volunteer Positions: Editor of EDS Today, the magazine for, by, and about>

people with Ehlers Danlos Syndrome, www.uggen.net/edstoday/. Secretary,

> DAHRT (Disabled Americans Have Rights Too) www.dahrt.org. Web> designer

and volunteer for Refugee Women's Alliance www.rewa.org.

>

> Hobbies and Interests: web design, reading, theater and dance, fishing,>

camping, writing, and disability activism.

> Personal Web-Site: www.uggen.net/personal/bunny.htm

>

> Current Projects: EDS Awareness Campaign, Feb 2002. Campaign Treasurer>

for Citizens for Kerry (for Federal Way Fire Commissioner)

> www.kerrydavis.com. Training my Siberian Husky/German Shepherd,> Sherlock

www.uggen.net/personal/sherlock.htm to be a service dog at> Paws-Abilities

www.everydoghas.com

>

> -Barb

[Guest guest]

Sue,

Thanks for the welcome. I'm a newbie. I don't understand the

difference between hypermobility syndrome and EDS III. My

daughter has flexible joints and has had knee and ankle

problems. Mainly, I want to make sure that she and I get the

optimum medical treatment. Is it worth pushing for the EDS

diagnosis?

-Nanette

> Hi to all the Newbies,

>

> My name is Ginley, I am 35yrs. old, and have the

vascular type of EDS.

> I am married with three children--a miracle in and off itself, but

they don't

> stop there. Have survived many arterial dissections, and

intestinal

> problems, and seem to be in somewhat of a " calm "

period--<crossing my fingers

> behind my back> . Must be all those nutritional supplements

I take or is

> it the medication I am on?--enough to kill an elephant--but not

a VEDSers

> with a very, very strong and stubborn constitution.

>

> I am also a registered nurse, and nutritionist, and always here

to answer

> questions--although I admit with EDS there are always so

many unanswerable.

> I am also the moderator for the VEDS list through

yahoogroups.com, and

> working on a webpage featuring medical journal articles on

VEDS and

> EDS--severe complications. Basically a quick resource

webpage, that may help

> docs., students, nurses, and those of us with VEDS/EDS get

quick information

> in an emergency. Will also be featuring memorials of those

who have lost

> their lives to EDS--if anyone sends me any. I think this is just a

very

> difficult subject and people don't want to respond, but will

feature anyone

> who wants their loved ones linked, or featured.

>

> Well, that's about it--hope this finds you all feeling well, and not

in too

> much pain.

>

> Love, Sue Ginley

>

> ~Life is tough, but I'm tougher~

[Guest guest]

Sue, I can't wait to see the web page! I know it will be a huge help to all

of us.

Love Lana

[Guest guest]

Name: Henneman

Birthday: July 3, 1950 I'm 51

Current Residence: Southern Wisconsin

but hubby transferred to the Appleton, Wisconsin

area-2-1/2 hours north of here. I'm soooo excited!

Diagnosis/Disability: Ehlers-Danlos Syndrome Hypermobile type (formerly

type III) and migraine induced seizures. The OK joints I have at this ripe

'old age' are ribs, elbows, and sorta the ankles

Age at diagnosis: 28

Marital Status: Married to Rod for 32 years this month.

Children/grandchildren: 3 children: ages 30, 28, 27.

2 grandchildren: ages 9 & 5 The 5 y/o girl appears to definately have EDS.

The 9 y/o boy -signs are highly suggesive of EDS. They are the children of

our 28 y/o, who also has EDS(obviously)-neither of the other 2 have it.

Occupation: Homemaker/RN (many years ago) until on disability at the old

age of 28.

Volunteer Positions: Secretry of the church council (small church).

Hobbies and Interests: reading, needlework when wearing ring splints, and

walking in the evening with hubby, and my cane.

I've been back on the list about a week-I think- after being off since Feb.

The 'bod' started biting the dust so to speak-and I took a needed break from

activities I was in, and took it very easy. Doing MUCH better now, and soooo

glad to be back. Missed all of you more than I can say.

By the way---thanks to all that have welcomed me back-I really enjoyed

hearing from you!

AND mostly--WELCOME to all those that are new since FEB!!

~hugs~

cindy

[Guest guest]

> Name: Rochelle Waite a.k.a Roachie

Birthday: 22nd December 1971 (Yep its looming for me too!)

> Current Residence: Gold Coast Australia...

Anyone who cares for a holiday let me know!!!

> Diagnosis/Disability: Ehlers-Danlos Syndrome Hypermobile type (formerly

> type III), FMS and CFS

> Age at diagnosis: 24 ( I think ) Of course thats 10 years after " its all

in your head and CFS diagnosis!

>

> Marital Status: Yeah right! Are there any eligible single men left?

> Children/grandchildren: Nope!

1 cat Felix and household shared cat Snapper!

Occupation: Currently singing and teaching piano and flute...about to finish

what I hope to be the final year of a Naturopathy Degree....Watch this

Space.....

>

> Volunteer Positions: Secretary of the Australian EDS Support Group..Yep I

promise, new website coming.....

Cheers

Roachie

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

*

* To Err is Human, *

* To Moo, Bovine! *

* *

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

[Guest guest]

Hey All!

i am melissa, 26, with hypermobility diagnosis right now. i live in chicago

with my hubby, 2 daughters(5 and 5 months), 2 cats, and a doggy. had lots

of problems over the past year, but seem to be doing well right now. THANK

GOD! find the list very helpful and glad i joined!!! i am looking for a

new doctor for this cuz my old one did not help at all. it helps me to be

on the list to first know, 'no, i am not crazy!' and secondly to talk to

others who go through the same weird stuff i do!

...

'I live in my own little world, but it's ok, they know me here.'

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Dear Nanette,

There really is no difference between EDS III and Hypermobility Syndrome,

although a few docs may disagree. I think doctors like to use this

distinction to explain why some have pain, and other problems, and some are

very hypermobile, but experience no pain. the problem with this kind of

thinking is, just because a young person does not experience pain on

dislocation at a cretain point in time, does not mean the joint is not

sustaining damage, and going to cause problems later in life. Just my

opinion, and hopefully others will chime in to explain this to you. Jill?

Are you out there?

Love, Sue Ginley

~Life is tough, but I'm tougher~

[Guest guest]

Hi! I'm , my 4 year old daughter has hip dysplasia, EDS 3. She is

adopted as are her two half siblings. The sibs are " loose jointed " but don't

have the problems that she has with pain. She takes Neurontin, which seems

to help her a great deal. She was also prenatally exposed to drugs, so the

neurontin also helps with mood stabilization which is good in her case.

I would also like a copy of the new article. Thanks. nancy

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Name: Glenda Millgate

Birthday: 17th April 1972

Current Residence: Canberra, capital city of Australia (no, Sydney is not the

capital)

Diagnosis/Disability: Husband Danny DOB 16th April 1971 and daughter Allie DOB

1st Jan 1996 both originally diagnosed with EDS but recently rediagnosed with

Osteogenesis Imperfecta (OI) type 1. My personal research and their unusual

symptom patterns mean that I describe them as having 'a type 1 collagen disorder

with features of Hypermobile type EDS and OI type 1'. 10 other family members

spanning 4 generations currently living with this.

Age at diagnosis: Danny at birth, Allie at 3, rediagnosis in 1999

Marital Status: together for 11 years, married for nearly 3.

Children/grandchildren: Other daughter DOB 28th April 1994, no EDS/OI. 3

cats, Georgie DOB 14 Feb 1994, Ron DOB 1 Jan 1996 (same as Allie), Tasha DOB 26

Sept 1998

Occupation: paid? nil. Home duties

Volunteer: Musical director of women's chorus, sing in a quartet, member of

national teaching faculty for singing organisation, assist at school - teaching

first year music, third year recorder & Japanese, doing craft and assisted

reading.

Study: supposedly doing a diploma in Information Technology by correspondence,

but I'm too busy doing the other important stuff with my kids!

[Guest guest]

Sue,

You said that right about joint damage later.

Usually there is little to no pain when I dislocate-but it sure does damage

the joint, and *eventually* it becomes very painful on dislocating and for

sometime after, because in my case the cartilage is wearing away to the

point it's bone on bone. Glad I became very careful not to play tennis for

fun any more, etc. when first diagnosed in my early 30's-- to keep this from

happening much soon than it has.

(I'm 51 now)

I can be as careful as can be, but when they spontaneously dislocates it

can't be helped.

Sure wish that I didn't have to get looser as I got older....

cindy

Subject: Re: Re: Who we all are.....

.. the problem with this kind of > thinking is, just because a young person

does not experience pain on

> dislocation at a cretain point in time, does not mean the joint is not >

sustaining damage, and going to cause problems later in life.

> Love, Sue Ginley

>

[Guest guest]

Jen,

> I'm Janette (Jen) Longshaw and I have Ehlers Danlos Syndrome although

> " they " don't know whether I have Hypermobility Type or Vascular Type as

> I show signs of both. My hips dislocate so badly now that I am unable to

Did they do a skin biopsy to test for Vascular?

-Barb

[Guest guest]

Jen,

Hi and welcome. Isn't there any surgery that would help your

hips?

a

> menagerie of animals that keep me busy and poor!

That sounds like fun. We have 2 cats, 1 bird and 1 turtle and this

is enough for now, considering my 13 year old son who is

disabled too is keeping me busy!

--------------------------

Nanette, depression, anxiety, HMS/FMS.

Mom to: Austin, 13, brain damage, bp1, DD, OCD; depakote,

wellbutrin, zyprexa, topamax; non-public school placement with

1:1 aide, Speech, OT, respite(when workers are available).

Caitlin, 16, previously dx'd with mood disorder nos.

My websites:

Parent To Parent: Bipolar

www.geocities.com/nmsaucier/PTP_BP.html

Travel Japan Directory:

www.geocities.com/nmsaucier/Japan.html

Travel Bargains Directory:

www.travelbargains.cheeb.com

[Guest guest]

Oh that would be great Roachie!

Jen

Rochelle Waite wrote:

> and we're due to have our second conference on 23-24 February

> > 2002. A year ago I uploaded a web site to tell everyone a bit about

> us

> > http://www.edfnz.org.nz

>

> Hi Jen,

>

> You never know, if I come into some money between now and then I might

> just

> pop over for that!

> Roachie

>

>

>

[Guest guest]

Hi Barbara.

No they didn't. When I saw Prof. Lowry (from Canada) he said that

the only geneticist he trusted to do any tests on me was Mike Pope.

There is a blood test here that I could get done but it costs $1,500 NZ

which is beyond me I'm afraid.

Sorry that it's taken me a while to reply to your email, my Dad had a

stroke on Tuesday and is in hospital. It's about the fourth one he's had

this year.

Jen

Barbara Uggen- wrote:

> Jen,

>

> > I'm Janette (Jen) Longshaw and I have Ehlers Danlos Syndrome

> although

> > " they " don't know whether I have Hypermobility Type or Vascular Type

> as

> > I show signs of both. My hips dislocate so badly now that I am

> unable to

>

> Did they do a skin biopsy to test for Vascular?

>

> -Barb

>

>

>

[Guest guest]

Hi Nanette.

No the surgeons won't touch my hips. I used to be able to walk, then

graduated to a walking stick at 12 years old then crutches for four

years. Finally a " physician " told me that if I went into hospital for

three weeks of intensive physio/hydro I would come out walking. The

physio tied weights to my ankles and stuck her fingers into my hip

joints in an effort to hold them in place as I raised my legs up and

down. Within a week I was barely walking, within three I was in a

wheelchair where I've been ever since.

Jen

nmsaucier@... wrote:

> Jen,

> Hi and welcome. Isn't there any surgery that would help your

> hips?

>

> a

> > menagerie of animals that keep me busy and poor!

>

> That sounds like fun. We have 2 cats, 1 bird and 1 turtle and this

> is enough for now, considering my 13 year old son who is

> disabled too is keeping me busy!

>

> --------------------------

> Nanette, depression, anxiety, HMS/FMS.

> Mom to: Austin, 13, brain damage, bp1, DD, OCD; depakote,

> wellbutrin, zyprexa, topamax; non-public school placement with

> 1:1 aide, Speech, OT, respite(when workers are available).

> Caitlin, 16, previously dx'd with mood disorder nos.

> My websites:

> Parent To Parent: Bipolar

> www.geocities.com/nmsaucier/PTP_BP.html

> Travel Japan Directory:

> www.geocities.com/nmsaucier/Japan.html

> Travel Bargains Directory:

> www.travelbargains.cheeb.com

>

>

>

>

>

>

>

[Guest guest]

In message , Bonnie

Heintskill writes

>> Sure wish that I didn't have to get looser as I got older....

>> cindy

>

> - I'm glad you made this observation as I feel the same way. I feel

>like I get " looser " as I get older and have more problems. I'll get into it

>more when I finally get around to my letter of intro

Some of my joints are tightening up due to the damage. The rest are

going looser and neither is much fun. Tightening up can make some of the

dislocations more " challenging " to reset. I know...... if they are

tightening up, why are they still dislocating? Well, you know what my

body is like. It does all sorts of things that shouldn't be possible.

Like how on earth did that section of my radius move when it had SIX

STEEL WIRES in it keeping it in place?! Stupid body........

--

Fuller

Winchester, England

HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing

loss, stomach problems, chronic depression, multiple allergies, asthma....

Please excuse any typos or odd phrases. I am talking to the Dragon.

[Guest guest]

Will be praying for your Dad and all of you Jen!

Love Lana