Just Diagnosed

[Guest guest]

a, sorry to hear your news, with that said, lets get going. This group is

the best. You will get all kinds of helpful info and documented news

articals. Ther are alot of smart people out there who are wonderful in

providing us with sugestions on living and managing with RA. Please take as

much as you can in, this is a turly a wonderful group. Judy from Indy

[Guest guest]

a: Welcome to the group. You will find this is the most compassionate

group who are always willing to give you support and advice as well as

articles. I am new to the group myself and really look forward to their

posts. I have had RA since 1994 (at least that was when finally dx'd). It

did hit me hard but I have learned to survive with the support of friends and

the Lord. I am no longer able to work and I do miss that, but them I'm not

that far away from retiring anyway. Sorry to hear about the dx, just

remember, we can learn to live with it and we are hear to support you, should

you need to vent. There are several online who are really informed and I'm

sure they will be sending you info. Take care.

Jan from SC

[Guest guest]

My daughter is scheduled for surgery in the beginning of October. And the Dr

she is seeing said he has seen alot of patients with this and actually these

children are extremely intelligent especially if their ears are a little low.

I have read nothing about this but I beleive he knows what he is talking

about. When I read about mental difficulties it worried me too, but I am not

worried anymore. My daughter seems very smart.

[Guest guest]

Hi nne, I'm 26 yrs old & have BPES. I have had many operations, the 1st being when I was 6 months old. The main outcome of the operations was that my eyes are more open, the main operation I had was muscle from my thigh put into my eyelids so I could open them more. I have also had the bridge of my nose narrowed, and lots more. It is still obvious that my eyes are different from everybody alses but at the end of the day I am who I am & I wouldn't be me with "normal eyes" There are some other probs associated with BPES I dont know much about them, but Fertility problems are associated - thats where I'm not so lucky. I wish somebody had mentioned this association to my parents when I was younger as I could have grown up to accept the fertility problems instead of it being announced by my consultant a few yrs ago. Would it be possable for your doctors to contact a specialist who does know about BPES or for you to travel abroad to see one. My specialist is at Moorfields Eye hospital in London. My consultant has done lots of research on BPES. I could pass his name on to you if you would like. Are your daughters eyes very bad? Does anyone else in your family have it. The only advise I can give from personal experience is to treat your daughter normally & not wrap her up in cotton wool. My parents never let me dwell on my eyes & encouraged me to do anything anyone else my age did - I think I'm stronger for this & see myself "normally"

sorry I'm not much help, I hope your Doctor can find some more information for you, or refer you to somebody who does know.

Hugs to your baby daughter

Best wishes

blepharophimosis Just diagnosed

Hello Everybody.Came home from the hospital yesterday, where my 7 months old daughter was diagnosed with BPES. Unfortunately, I live in Denmark, and doctors here seem to have very little experience with this syndrome. Can you help me? I cannot seem to find anything written in layman's terms about this condition, and I have no idea what this will imply for her. I can see that a lot of you have experience with operations. What are the results of these? How will our babies look when the get older? Are there any other conditions following this? I found some websites mentioning learning difficulties and mental retardation? I am sooo confused, and I hope you will be able to provide me with more information since the doctors here seem to be able to tell very little. Thank you very much in advance. nne

[Guest guest]

hello everyone,

I am 23, and so far I have not read any material that links blepharophimosis

and mental difficulties. The only link that I have seen is the possibility

of female infertility. I am the 4th generation with BPES, and so far I dont

think any of us have had any mental difficulties. And I dont know how much

this helps, but personally I am in my second year of law school....So I dont

think my intelligence has been affected by BPES. (Although, I'm sure that

many think lawyers are not intelligent.)

I hope this has helped.

Dalia

>From: Noonnaanay@...

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Just diagnosed

>Date: Tue, 10 Sep 2002 11:08:30 EDT

>

>My daughter is scheduled for surgery in the beginning of October. And the

>Dr

>she is seeing said he has seen alot of patients with this and actually

>these

>children are extremely intelligent especially if their ears are a little

>low.

>I have read nothing about this but I beleive he knows what he is talking

>about. When I read about mental difficulties it worried me too, but I am

>not

>worried anymore. My daughter seems very smart.

>

>

>

>

[Guest guest]

Dear nne,

Hello I'm the mother of a 31/2 month old boy who had the first operation

3 weeks ago. He is doing great and thankfully can see. His eye muscle

control has improved extensively in just 3 weeks. He is thankfully, a happy

and content baby and is curious about his new ability to see past his eye-

lids. The diagnosis was made when he was only ten days old, the following

two months was torture for me, dealing with the reality, researching an

uncommon syndrome, RESEARCHING SURGONS, making the decision to operate now,

and finally the operation and after effects. Weeks later I am not so worried

and can enjoy Aedan fully. I dont see any signs of developmental delays and

I think his vision will be ok too. Still an ongoing challange is in dealing

with others comments. Hearing " He looks so tired. " over and over really is

getting to me. We live in NYC and everybody has a comment, kind or not so

kind. Moving from my gripes I am glad that we make the decision to do the

first operation early. Our surgeon is Dr. Maher at ny eye and ear

Hospital. She did a fine job, Aedan looks better that I had hoped. We are

going back to the opthamologist in two weeks.

warm thoughts are with you.

[Guest guest]

Dear ,

Hello I an allison, mother of Aedan a 31/2 month old who just had his

first eye-lid lifting surgury 3 weeks ago. We live in NYC, did you get

support from anyone other than family when you were growing up? I am curious

about support groups for Aedan as he grows. Thankyou,

[Guest guest]

,

How is Aedan? Is he recovering well?

In answer to your question, the only support I had other than family were my

friends. I also made great friends with the nurses at the eye hospital i

attend. When I was younger I never met anybody else with BPES as I was told

it was so rare, I know there are support group for people with " deformed "

faces but my family & I never never thought of me like that, so I just

mixed with " normal " people. Sometimes it would have been nice to talk with

other people who understand what I'm going through.I will email a lady I

know as she regularly meets up in America with other people ith BPES I will

get back to you with the reply.

Re: blepharophimosis Just diagnosed

> Dear ,

> Hello I an allison, mother of Aedan a 31/2 month old who just had his

> first eye-lid lifting surgury 3 weeks ago. We live in NYC, did you get

> support from anyone other than family when you were growing up? I am

curious

> about support groups for Aedan as he grows. Thankyou,

>

>

>

[Guest guest]

Welcome!

4 peope in 4 generations of my family have BPES, including me and my

daughter who is now 13 months old. (Lily)

My daughter was our " chunky monkey " so I can relate, love those chubby

rolls on their legs.

My daughter has had slings to repair her ptosis, I have had surgeries

also.

My surgeries were done in PGH, my daughter's at Children's in DC.

I hope I and the others can help you.

Beth

--- In blepharophimosis , " chunkers01 " <chunkers01@y...>

wrote:

> My 4 month old son, , was just diagnosed w/ BPES. Still

> gathering information on the condition. He is the first in the

family

> to have this condition. Older brother has the biggest, roundest eyes

> you could imagine. We have been referred to a Pediatric

Opthamologist

> that specializes in eyelid & orbital reconstruction. We live in a

> suburb of Rochester, NY. Wondering if anyone else lives in the area

> and can provide information about DRs. Also would appreciate any

> information/insight on your expriences with surgery. I am assuming

it

> will be inevitable.

>

> By the way, chunkers is 's nickname. Because of

his " healthy "

> thighs.

>

> Amie

[Guest guest]

Amie,

Welcome. We live in Lockport, NY. Not very far from you. Our son is 2 years old. He is the 1st in our family to have Bleph (BPES).

We see Dr. Awner to manage 's eye sight. He is a pediatric ophthalmologist in Amherst, a suburb of Buffalo. He is wonderful

We also see Dr. Iliff at s Hopkins in Baltimore MD for 's Plastic surgery. He is an Oculplastic and Reconstructive surgeon. Also wonderful.

There is someone local (Buffalo). Dr. Schaefer. I know he has treated people with BPES. I know a 19 year old girl from Lockport with bleph who is a patient of his.

I did not like Dr. Schaefer. That is why we looked elsewhere.

I also know of someone else local who has Bleph. Her family takes her to a Surgeon in Utah. She will most likely contact you via e-mail herself she is a part of this site and is the one who told me about it.

Good Luck and God Bless

Beth

chunkers01 <chunkers01@...> wrote:

My 4 month old son, , was just diagnosed w/ BPES. Still gathering information on the condition. He is the first in the family to have this condition. Older brother has the biggest, roundest eyes you could imagine. We have been referred to a Pediatric Opthamologist that specializes in eyelid & orbital reconstruction. We live in a suburb of Rochester, NY. Wondering if anyone else lives in the area and can provide information about DRs. Also would appreciate any information/insight on your expriences with surgery. I am assuming it will be inevitable.By the way, chunkers is 's nickname. Because of his "healthy" thighs.Amie__________________________________________________

[Guest guest]

Hi,

My name is kerry bennett and i live in Australia i have a daughter with bpes she is three and has just had her first op a couple of weeks ago if you would like to see her pics they are under the name Mackeely she has another app with her doc in november she will then be schelulded for her next opp.chunkers01 <chunkers01@...> wrote:

My 4 month old son, , was just diagnosed w/ BPES. Still gathering information on the condition. He is the first in the family to have this condition. Older brother has the biggest, roundest eyes you could imagine. We have been referred to a Pediatric Opthamologist that specializes in eyelid & orbital reconstruction. We live in a suburb of Rochester, NY. Wondering if anyone else lives in the area and can provide information about DRs. Also would appreciate any information/insight on your expriences with surgery. I am assuming it will be inevitable.By the way, chunkers is 's nickname. Because of his "healthy" thighs.Amie

[Guest guest]

Jackie,

I too was diagnosed " young " , age 33. I have 3 little kids as well. Sorry

you had to join this group but welcome. You will find a great bunch of people

whom will give you great advice and support.

I suffer from constant gastritis from the Gleevec. Take it with a large

meal and drink plenty of water. The fatigue is something that lingers on for a

long time but the bone pain tends to where off after it saps the leukemic

cells. You will be in remission of some level very soon. Keep up the positive

attitude and thoughts. This is very scary and life changing but you will

still live a productive and wonderful life.

Listen to your body! When your tired, rest. Keep in touch with these sites

as they are a wealth of information. Warm welcomes!

[Guest guest]

>

>

> Jackie, I live in Melbourne, I have had cml since 1993, maybe we

live near by, I live in Glen Waverley

Judy Telford

[Guest guest]

Hang in there Jackie. I'm 30 years old and was Diagnosed at the beginning of

October this year. It is scary at first but read everything you can and you

will learn that you can get through this.

Big hugs!

:{

View our family's photos at webshots

Our pet's pages:

Simba: www.catster.com/?219163 Nala: www.dogster.com/?215653 Kovu:

www.dogster.com/?225974

[Guest guest]

, My God you are younger than I am! I find it unbelievable and you too

were diagnosed not long before me. Scary, yes for sure. I am reading heaps and

trying to learn, take in and be positive at the same time. I just want to get

on this pill and start zapping this thing.

Hugs to you too.

" lunaemica@... " <lunaemica@...> wrote:

Hang in there Jackie. I'm 30 years old and was Diagnosed at the beginning of

October this year. It is scary at first but read everything you can and you

will learn that you can get through this.

Big hugs!

:{

View our family's photos at webshots

Our pet's pages:

Simba: www.catster.com/?219163 Nala: www.dogster.com/?215653 Kovu:

www.dogster.com/?225974

[Guest guest]

There are many of us in our 30s and younger...I just turned 30 a month and a

half after my diagnosis. So don't feel that you are alone. Gleevec will work

for you, stay positive!

:}

View our family's photos at webshots

Our pet's pages:

Simba: www.catster.com/?219163 Nala: www.dogster.com/?215653 Kovu:

www.dogster.com/?225974

[Guest guest]

Hi Jackie,

Welcome to the group. You are by no means the only young one here

with CML. I was diagnosed at the age of 31 and have two daughters.

I'm now 35 and doing fine, as are the majority of people on Gleevec so

there's every reason to be hopeful at this stage.

Your head is probably reeling, trying to understand the basic concepts

so I encourage you to check out our " files " section. At the left of

the screen, you'll see the word " files " in the menu list. Click on it

and you'll find a CML FAQ as well as a CML glossary. This should help

you to understand the basics. Don't hesitate to ask any questions you

may have, chances are that someone here will be able to answer it, or

at least point you in the direction where you can find an answer.

Take care,

Tracey

(dx Jan 2002)

[Guest guest]

Jackie, you sure came to the right place. This group has brought me information,

clarity, comfort and relief!

I began taking Gleevec 800 mg. a day in April and have had ups and downs side

effectwise, but it sure seems to be working. The folks in this online group have

helped me ask the right questions all along the way. You're

right, we do seem to be more vulnerable to CML around midlife (I'm 54). But

several months into the treatment, I work full time, work out daily (granted,

not for very long) -- even got out on my bicycle the other day!

Bottom line: don't be afraid! Sure wish I lived closer.

Blue Shadow wrote:

> Dear Group,

>

> I have been diagnosed with CML two weeks ago and although I am determined to

be 100% positive I am also scared. Baffled too because this disease seems to

hit older people. I am 44 living in Melbourne, Australia.

>

> I have to be OK for my two daughters.

>

> I should be going on Glivec the end of this week or the beginning of next.

>

> The doctor has told me that I have 80% chance of total remission in 3 months.

I can't wait to get on these pills and blast these damned things out.

>

> Few symptoms at the moment apart from tiredness and a too large spleen which

is annoying.

>

> I am hoping that there is someone around where I live who I could talk to?

>

> Jackie

>

>

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

> Music Unlimited - Access over 1 million songs. Try it free.

>

>

[Guest guest]

Hi ,

This is the whole point, I am reading and reading stuff but some doesn't even

relate. I feel positive but then when I read something even slightly negative

my whole heart just sinks.

I would like to know just how up to date the doctors and haemologists over

here are?

Jackie

" lunaemica@... " <lunaemica@...> wrote:

Hang in there Jackie. I'm 30 years old and was Diagnosed at the beginning of

October this year. It is scary at first but read everything you can and you

will learn that you can get through this.

Big hugs!

:{

View our family's photos at webshots

Our pet's pages:

Simba: www.catster.com/?219163 Nala: www.dogster.com/?215653 Kovu:

www.dogster.com/?225974

[Guest guest]

I understand Jackie. I was very frustrated in the begining and am still

wondering if I should switch oncologists. I guess we just have to educate

ourselves as much as possible and be our own advocates.

:}

View our family's photos at webshots

Our pet's pages:

Simba: www.catster.com/?219163 Nala: www.dogster.com/?215653 Kovu:

www.dogster.com/?225974

[Guest guest]

Hi...my name is Eve and I am a 36 year old female who has already been

on disability for years for a condition called Startle Disease (a

neurologic disorder which is extremely rare). I just spent the past

week in the University of Penn hospital and have been diagnosed with RA.

Currently I have no treatment as all tests will take about 2 weeks to

come back to determine their course of action. I make my return visit

in two weeks and scared to death!

The arthritis is in my hand joints, knees, ankles, feet tendons and

toes. At this point I am on Dilaudid and Naproxen until the dreaded

return visit just to control the pain for now.

I actually do not know why I am posting...I guess I am just glad to

know I am not alone.

Thank you for taking the time to read my post!

Eve

[Guest guest]

Edgardo, are you applying with Novartis?

[ ] Just diagnosed

Hello!

I was just diagnosed with CML. I'm looking for some advise....I

was diagnosed in mexico after a routine exam....in process to apply for

glivec.....since my diagnostic was in mexico I'm looking for a doc here

in Las Vegas or center for my treatment......Thanks!

[Guest guest]

Hi Kristie!

Yes, I did call novartis but, they ask me to get a doctor here,

then they will provide glivec. I'm already on treatment with hydrea and

allopurinol prescribed in Mexico. Hopefully, they will take the lab work, anyway

how do I find a research center or Doctor here in Las Vegas?....how do I know

about people with CML in Las Vegas?

Thanks for answering and God bless you!

From: Kristie Skipper <skipper3@...>

Sent: Saturday, January 19, 2008 5:41:09 PM

Subject: Re: [ ] Just diagnosed

Edgardo, are you applying with Novartis?

[ ] Just diagnosed

Hello!

I was just diagnosed with CML. I'm looking for some advise....I

was diagnosed in mexico after a routine exam....in process to apply for

glivec.....since my diagnostic was in mexico I'm looking for a doc here

in Las Vegas or center for my treatment... ...Thanks!

[Guest guest]

OOPs, I meant yellowpages.com

[ ] Just diagnosed

Hello!

I was just diagnosed with CML. I'm looking for some advise....I

was diagnosed in mexico after a routine exam....in process to apply for

glivec.....since my diagnostic was in mexico I'm looking for a doc here

in Las Vegas or center for my treatment... ...Thanks!