Rylee flap surgery

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Hi All Rylee had successful flap removal surgery on Monday the 19th. She is in great spirits and healing nicely. She was a trooper and never once cried. Looking forward to seeing the shape of her eyes after the steri strips come off. Aimee in San DiegoShireen Mohandes <shireen@...> wrote: Hi Nici Welcome to the group. May I recommend that you take a look here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html However, I think that you will need some help in understanding it. Perhaps one approach would be to send this article to your

geneticist and then make an appointment with them, and say that you want them to explain it to you. Also, you may find it useful to read post from Jeroen, I will forward it to the group. It is pretty easy to understand. Jeroen is in the medical profession, so it is nice to have the benefit of his advice and explanation. One thing is pretty important to understand, we are all different in our own way, and there is no substitute for good professional medical advice. Hopefully reading the information here will help you to work out what questions to ask your doctor. I am not medically trained, so I don't want to give any advice. However, it is pretty commonly known that a simple blood test will reveal if you are likely to have POF. This can be arranged by your doctor. Please keep in touch, and once again, welcome Take care Shireen Mohandes London, England (I am female, 26 years old, and the only person in my family with BPES) From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Nicola FujaraSent: 18 March 2007

16:14blepharophimosis Subject: blepharophimosis Re: Type 1 or Type2 ? Hi,i'm a 17 year old Germany. My English is not the best, but i hope youwill understand what i say.A few month ago the specialists in Belgium found out that i have BPES,but they couldn't say what type i have.They said that i should talk to the genetic specialists in Heidelbergto find out more about that disease. Unfortunately they couldn't giveme new information. So i decided to search on my own for informationand i came across this group. I started to read some posts. When iread a post of Gunter i noticed that a lot of what she said isthe same like me. So, now i'm quite sure that i have POF.About that i have some questions:Can i have a baby later?Do i already have the menopause?Are there more effects?I would be very happy

if you can help me :)Nici

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Aimee sounds great. We look forward to seeing Rylee's before and after pictures. I wish you all well. Carla CTAimee Nimtz <aimeenimtz@...> wrote: Hi All Rylee had successful flap removal surgery on Monday the 19th. She is in great spirits and healing nicely. She was a trooper and never once cried. Looking forward to seeing the shape of her eyes after the steri strips come off. Aimee in San

DiegoShireen Mohandes <shireenhartsdale (DOT) co.uk> wrote: Hi Nici Welcome to the group. May I recommend that you take a look here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html However, I think that you will need some help in understanding it. Perhaps one approach would be to send this article to your geneticist and then make an appointment with them, and say that you want them to explain it to you. Also, you may find it

useful to read post from Jeroen, I will forward it to the group. It is pretty easy to understand. Jeroen is in the medical profession, so it is nice to have the benefit of his advice and explanation. One thing is pretty important to understand, we are all different in our own way, and there is no substitute for good professional medical advice. Hopefully reading the information here will help you to work out what questions to ask your doctor. I am not medically trained, so I don't want to give any advice. However, it is pretty commonly known that a simple blood test will reveal if you are likely to have POF. This can be arranged by your doctor. Please keep in touch, and once again, welcome Take care Shireen Mohandes London, England (I am female, 26 years old, and the only person in my family with BPES) From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Nicola FujaraSent: 18 March 2007 16:14blepharophimosis Subject: blepharophimosis Re: Type 1 or Type2 ? Hi,i'm a 17 year old Germany. My English is not the best, but i hope youwill understand what i say.A few month ago the specialists in

Belgium found out that i have BPES,but they couldn't say what type i have.They said that i should talk to the genetic specialists in Heidelbergto find out more about that disease. Unfortunately they couldn't giveme new information. So i decided to search on my own for informationand i came across this group. I started to read some posts. When iread a post of Gunter i noticed that a lot of what she said isthe same like me. So, now i'm quite sure that i have POF.About that i have some questions:Can i have a baby later?Do i already have the menopause?Are there more effects?I would be very happy if you can help me :)Nici It's here! Your new message!Get new email alerts with the free Toolbar.

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