Re: New Memeber

[Guest guest]

Hi, I just joined the group my name Is and I am 38 and married with

two teenagers Keriann who is 14 and who is 16 .

They found out I have Lupus 4 months ago. It started last July

with Pleurisy I would get it every 2 months and end up in the hospital ER. I

have joint pain in my feet and hands and pretty much every where.

I also have hypo-gamma and what that is, I have NO B- cells in my immune

System. So I go once a month for an IV gamma treatment that takes 8 hours and

am sick in bed for 5 days.

The Hypo gamma is easy now, I have been doing this for 4 years. And is

working great, use to have sinus Infections every month

The hard part is the Lupus, Having a hard time dealing with it. And it

great to know I am in your group now.

I am on a support group for My gamma and I think that is what has helped me

the most.

thanks for all your help

jenny

[Guest guest]

,

Welcome to the group. I don't have RA or anything like that but i am 32 with

5 boys ages 13,11,9,5,and youngest just turned 4. My 11 year old son

has Sytemic Onset JRA. He is about 49 inches tall and last weighed in at 48

1/2 pounds. was DX in 94 with the JRA and in 95 for on Systemic Onset.

Which means his form of arthritis attacks vital organs.In his case he gets

inflammation and fribrosis in his lungs. He is on may different meds and just

started on Enbrel injections which seem to be helping so much that he acts

like a different kid. He is not out of the woods yet cause the JRA has

destroyed the joint in his left wrist. He only has 5% range of motion. He was

also born with a club foot and the JRA has affected that as well and that leg

is also 1/2 inch shorter then the other leg and that cause alot of pain for

him. All his joints are affected but his hands,wrist and fingers knees and

ankles are more affected then the others. He is not attending school at the

moment. We have a lawsuit going because his school won't identify him as a

disabled child. This is a new school for him and they are very ignorant about

this and we might have some good news. have to go to the lawyers office in 2

days for a meeting so either we go to court or the school settled and will

give the homebound services that he is entitled to and should have

been getting all along due to his absences.

Any way my house is never dull. We usually have one thing going on all the

time. trips to the er for stitches and tubes put in ears that kind of stuff.

You will love this group. everyone one here is so special and interesting

that you can almost be addicted to this group. I really hope you enjoy this

group and they are able to help you. take care, and

[Guest guest]

Welcome . I'm glad you've found us! I'm 45, married and have 4

children, 2 which are stepchildren. I have RA, OP and FM. My knees and

feet are my worse joints.

I'm not familiar with hypo-gamma. Do they think the Lupus comes from

hypo-gamma?

I enjoy researching for the group, so if you have any specific questions,

feel free to ask.

We have several people on the list that have Lupus or are seeking diagnosis

for it.

a

----- Original Message -----

From: <Kyker624@...>

< egroups>

Sent: Monday, May 08, 2000 11:33 AM

Subject: Re: [ ] New memeber

> Hi, I just joined the group my name Is and I am 38 and married

with

> two teenagers Keriann who is 14 and who is 16 .

>

> They found out I have Lupus 4 months ago. It started last July

> with Pleurisy I would get it every 2 months and end up in the hospital ER.

I

> have joint pain in my feet and hands and pretty much every where.

> I also have hypo-gamma and what that is, I have NO B- cells in my

immune

> System. So I go once a month for an IV gamma treatment that takes 8 hours

and

> am sick in bed for 5 days.

> The Hypo gamma is easy now, I have been doing this for 4 years. And is

> working great, use to have sinus Infections every month

>

> The hard part is the Lupus, Having a hard time dealing with it. And

it

> great to know I am in your group now.

> I am on a support group for My gamma and I think that is what has helped

me

> the most.

> thanks for all your help

> jenny

>

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

> High rates giving you headaches? The 0% APR Introductory Rate from

> Capital One. 9.9% Fixed thereafter!

> 1/3010/6/_/478567/_/957799999/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Hi , Welcome to the group. My name is Candy and I too have

lupus, & RA. I am 38 years old, married to a firefighter and the love

of my life. We have a son, Cody who is 3. I am a nurse of 16 years

but because of the advancement of my lupus and the pain and

neuropathy I have I am unable to work. I are glad you joined the

group and know you will find much support and companionship here.

Hugs, Candy

> Hi, I just joined the group my name Is and I am 38 and

married with

> two teenagers Keriann who is 14 and who is 16 .

>

> They found out I have Lupus 4 months ago. It started

last July

> with Pleurisy I would get it every 2 months and end up in the

hospital ER. I

> have joint pain in my feet and hands and pretty much every where.

> I also have hypo-gamma and what that is, I have NO B- cells in

my immune

> System. So I go once a month for an IV gamma treatment that takes 8

hours and

> am sick in bed for 5 days.

> The Hypo gamma is easy now, I have been doing this for 4 years.

And is

> working great, use to have sinus Infections every month

>

> The hard part is the Lupus, Having a hard time dealing with

it. And it

> great to know I am in your group now.

> I am on a support group for My gamma and I think that is what has

helped me

> the most.

> thanks for all your help

> jenny

[Guest guest]

Welcome to our very uniquely supportive and informative group, !

Sorry you are having such a hard time with lupus. It can be such a tough

battle. I have read quite a bit about it, and I think that I may possibly

have it. There are several people in our group who have lupus.

I'm interested in the fact that you have hypogammaglobulinemia. That is much

more uncommon in lupus than hypergammaglobulinemia (which I have). Glad that

the treatments are helping you. Would you mind telling me, if you have been

having those treatments for four years, to what did they attribute your

hypogammaglobulinemia?

I'm 40, and I have three children ages 15, 13, and 8 and am in the process

of divorcing my husband. I currently have diagnoses of RA, polyarthritis,

and osteoarthritis, among other things, but there is no consensus among the

physicians I have seen. I suspect that I could have lupus or MCTD. Still

searching!

Hope you enjoy this warm, caring group as much as I do.

----- Original Message -----

From: <Kyker624@...>

< egroups>

Sent: Monday, May 08, 2000 10:33 AM

Subject: Re: [ ] New memeber

> Hi, I just joined the group my name Is and I am 38 and married

with

> two teenagers Keriann who is 14 and who is 16 .

>

> They found out I have Lupus 4 months ago. It started last July

> with Pleurisy I would get it every 2 months and end up in the hospital ER.

I

> have joint pain in my feet and hands and pretty much every where.

> I also have hypo-gamma and what that is, I have NO B- cells in my

immune

> System. So I go once a month for an IV gamma treatment that takes 8 hours

and

> am sick in bed for 5 days.

> The Hypo gamma is easy now, I have been doing this for 4 years. And is

> working great, use to have sinus Infections every month

>

> The hard part is the Lupus, Having a hard time dealing with it. And

it

> great to know I am in your group now.

> I am on a support group for My gamma and I think that is what has helped

me

> the most.

> thanks for all your help

> jenny

[Guest guest]

a, Thanks for the welcome:) They say that 20% of people with hypo- gamma

get Lupus.Your group sound wonderful.

hugs jenny

[Guest guest]

Welcome to the group

~Esther & Carol~

----- Original Message -----

From: <Kyker624@...>

< egroups>

Sent: Monday, May 08, 2000 11:33 AM

Subject: Re: [ ] New memeber

> Hi, I just joined the group my name Is and I am 38 and married

with

> two teenagers Keriann who is 14 and who is 16 .

>

> They found out I have Lupus 4 months ago. It started last July

> with Pleurisy I would get it every 2 months and end up in the hospital ER.

I

> have joint pain in my feet and hands and pretty much every where.

> I also have hypo-gamma and what that is, I have NO B- cells in my

immune

> System. So I go once a month for an IV gamma treatment that takes 8 hours

and

> am sick in bed for 5 days.

> The Hypo gamma is easy now, I have been doing this for 4 years. And is

> working great, use to have sinus Infections every month

>

> The hard part is the Lupus, Having a hard time dealing with it. And

it

> great to know I am in your group now.

> I am on a support group for My gamma and I think that is what has helped

me

> the most.

> thanks for all your help

> jenny

>

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

> High rates giving you headaches? The 0% APR Introductory Rate from

> Capital One. 9.9% Fixed thereafter!

> 1/3010/6/_/478567/_/957799999/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Welcome Candy to the group

~Esther ......who has arthritis and Fibro......Carol, Mom~

----- Original Message -----

From: Candy <CandyC6996@...>

< egroups>

Sent: Monday, May 08, 2000 6:52 PM

Subject: Re: [ ] New memeber

> Hi , Welcome to the group. My name is Candy and I too have

> lupus, & RA. I am 38 years old, married to a firefighter and the love

> of my life. We have a son, Cody who is 3. I am a nurse of 16 years

> but because of the advancement of my lupus and the pain and

> neuropathy I have I am unable to work. I are glad you joined the

> group and know you will find much support and companionship here.

> Hugs, Candy

>

>

>

>

> > Hi, I just joined the group my name Is and I am 38 and

> married with

> > two teenagers Keriann who is 14 and who is 16 .

> >

> > They found out I have Lupus 4 months ago. It started

> last July

> > with Pleurisy I would get it every 2 months and end up in the

> hospital ER. I

> > have joint pain in my feet and hands and pretty much every where.

> > I also have hypo-gamma and what that is, I have NO B- cells in

> my immune

> > System. So I go once a month for an IV gamma treatment that takes 8

> hours and

> > am sick in bed for 5 days.

> > The Hypo gamma is easy now, I have been doing this for 4 years.

> And is

> > working great, use to have sinus Infections every month

> >

> > The hard part is the Lupus, Having a hard time dealing with

> it. And it

> > great to know I am in your group now.

> > I am on a support group for My gamma and I think that is what has

> helped me

> > the most.

> > thanks for all your help

> > jenny

>

>

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

> eGroups eLerts

> It's Easy. It's Fun. Best of All, it's Free!

> 1/3863/6/_/478567/_/957826365/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

a...what is any meds are you on now? sherri

[Guest guest]

Hi Felicia

My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in London UK.

Questions about the suitability of surgery depends largely on individual cases, results will depend on the facial features and other things pertaining to the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and Tina has had 2 surgeries. The results have varied widely. Tina who had only 2 seemed to have better results.

The other issue is that of fertility. Some type of BPES prevent women from being able to conceive. Congratulations on the birth of your child.

A good idea is to find people in the area where you are situated, as they may know of doctors that can answer your questions also read up on some of the earlier post and finally look up some of the before/after pictures.

I hope this helps

Happy Easter

Joyce

London UK

[Guest guest]

New Member:

You will never be judged by me... I just want to say welcome and anything that

I can provide you with I will. Congrats on being a mother because there are

females with Bleph that cannot conceive because of POF. You are blessed!!!! I

hope you find all the answers you seek!!!!

Nicki

blepharophimosis New Memeber

Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a

3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I

dont seem to love is the fact that it would look so much better if the skin was

pinched inbetween my nose to make them appear closer together .. and to make the

inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are

there any risks in taking the surgery ?

And also are there any moms out theree who have blepharophismosis?

anything really would help ..

thankss .

[Guest guest]

Thank you. I feel blessed to have be able to conceive a child. Did your daughters inherit BPES from their father?

blepharophimosis From: joyceaibitoye@...Date: Mon, 5 Apr 2010 07:32:00 -0400Subject: Re: blepharophimosis New Memeber

Hi Felicia

My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in London UK.

Questions about the suitability of surgery depends largely on individual cases, results will depend on the facial features and other things pertaining to the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and Tina has had 2 surgeries. The results have varied widely. Tina who had only 2 seemed to have better results.

The other issue is that of fertility. Some type of BPES prevent women from being able to conceive. Congratulations on the birth of your child.

A good idea is to find people in the area where you are situated, as they may know of doctors that can answer your questions also read up on some of the earlier post and finally look up some of the before/after pictures.

I hope this helps

Happy Easter

Joyce

London UK

Videos that have everyone talking! Now also in HD! MSN.ca Video.

[Guest guest]

Felcia,

No I do not have bleph. My daughter

Avery is the first in our family. She is almost 4years old and will be

scheduled for her final surgery this year. She too has the wide nasal

bridge. My husband and I do not know if we should schedule her for a

surgery to narrow the distance or wait until she is about your age and see if

she wants the surgery (we will pay for whatever she wants done). We are

also not sure if we want to do the genetic testing to see if she is a Type 1 or

Type 2. Type 1 will mean possible difficulty conceiving a child. We

are clueless as what to do. I also have a 7 month old boy and he does not

have Bleph and I am due in July of this year with another boy…

Nicki

Venable

Section

Chief

Community Development

County Community Corrections

201 West Superior

Street

Fort Wayne, Indiana 46802

(260)

449-7252

This message contains confidential

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confidentiality rules (42 CFR Part 2) and IC 16-39. The information in

this email is intended only for the use of the named addressee, individual(s)

or entity named above. The federal rules prohibit you from making any

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any errors or omissions in the contents of this message which arise as a

result of e-mail transmission.

From: blepharophimosis

[mailto:blepharophimosis ] On

Behalf Of feliciaa -x

Sent: Monday, April 05, 2010 9:49

AM

blepharophimosis

Subject: RE: blepharophimosis

New Memeber

Thank

you, I feel very blessed.

Do you have BLEPH ?

blepharophimosis

From: nicki.venableco (DOT) allen.in.us

Date: Mon, 5 Apr 2010 08:04:25 -0400

Subject: RE: blepharophimosis New Memeber

New Member:

You will never be judged by me... I just want to say welcome and anything that

I can provide you with I will. Congrats on being a mother because there are

females with Bleph that cannot conceive because of POF. You are blessed!!!! I

hope you find all the answers you seek!!!!

Nicki

blepharophimosis New Memeber

Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

Ive had 2 surgerys when I was a child .. I believe that I was surposed to have

a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part

I dont seem to love is the fact that it would look so much better if the skin

was pinched inbetween my nose to make them appear closer together .. and to

make the inner corner whiteness appear. Would the 3rd surgery accomplish that

?.. and are there any risks in taking the surgery ?

And also are there any moms out theree who have blepharophismosis?

anything really would help ..

thankss .

Live connected. Get Hotmail Messenger for mobile.

[Guest guest]

Hi felicia, welcome to the group. My name is matt. I am 34. My father, my 4 yr

old savannah, my ten month old ben, and i have bpes. My heart goes out to you.

To answer your question about the skin between your eyes: yes you can have

surgery to pull it in and expose the whites of your eyes. My 4 yr old just last

month had three procedures done all in the same day. Do you have facebook? All

of the photos of her are there. I told my wife, who doesn t have bpes, about

your email and she felt for you and offered her email address if you ever needed

to talk. Her email : neenee2285@...

where are you from? Is there a family history of bpes? Hope to hear from you.

Matt demartile

On Sat Apr 3rd, 2010 8:17 PM PDT felicia.macneil wrote:

>Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

>

>Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

>

>Ive had 2 surgerys when I was a child .. I believe that I was surposed to have

a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I

dont seem to love is the fact that it would look so much better if the skin was

pinched inbetween my nose to make them appear closer together .. and to make the

inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are

there any risks in taking the surgery ?

>

>And also are there any moms out theree who have blepharophismosis?

>

>anything really would help ..

>

>thankss .

>

[Guest guest]

Hey Felicia

Thanks for your reply. My girls did inherit from their dad. I dont have it myself.

I am greatly encouraged by your story. The hardest thing in BPES for us was the chance that POF could occur in both my girls. So well done again. Your daughter is indeed a blessing.

It is important to state where you are based as this will help people on the forum that live close to give more info relevant to you.

Joyce

London UK

Re: blepharophimosis New Memeber

Hi Felicia

My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in London UK.

Questions about the suitability of surgery depends largely on individual cases, results will depend on the facial features and other things pertaining to the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and Tina has had 2 surgeries. The results have varied widely. Tina who had only 2 seemed to have better results.

The other issue is that of fertility. Some type of BPES prevent women from being able to conceive. Congratulations on the birth of your child.

A good idea is to find people in the area where you are situated, as they may know of doctors that can answer your questions also read up on some of the earlier post and finally look up some of the before/after pictures.

I hope this helps

Happy Easter

Joyce

London UK

Videos that have everyone talking! Now also in HD! MSN.ca Video.