RE: our privilege

[Guest guest]

I completely agree with your advice Debbie.

Also, the comments made by Tonikka (see earlier post) seem to be very informative. I am 43 now, and I know that the surgery that I had when I was 2.5, 12 and 18 would not necessarily be the same technique recommended nowadays. I asked the consultants at Moorfields Eye Hospital "do you still so the same type of surgery?", and they replied that not necessarily, that they had more options available, and the result would be better nowadays. That is one reason why I am very reluctant to go into details of what procedures were done on me, as I guess they are mostly irrelevant.

As I have mentioned before, the severity of the BPES is quite different in people. For example, I know of some people who have never had any surgery and they look pretty good. Also, to give an example, some people are not sensitive to light, yet I know of one little girl who is so sensitive she cannot go out during the day at all (when she was a baby she would not wear sun glasses or ski goggles so her mum used to have to take her out at nights only). I am quite sensitive to light. I need to wear sunglasses most of the time for driving and when I go to the dentist. Another area where we all seem to have quite a range of symptoms is problems with tear ducts and problem eyelashes. I have never had any of these problems, but I know that several people have had some unpleasant times coping with these issues.

I guess the point I am trying to make is that there is quite a range of problems, and they in turn have a range of severity. Debbie's advice seems to be the best way of getting the information you need when it comes to surgery.

Shireen (London, England)

-----Original Message-----From: Debbie [mailto:debweston@...]Sent: 12 April 2004 00:41blepharophimosis Subject: blepharophimosis our privilegeI want to suggest to parents out there...who are questioning when to have surgery, what surgeries are required for your child's welfare and other concerns you may have...is to ask the professionals/doctors questions, seek a 2nd opinion, ask more questions, ask the doctor/surgeon to provide you with names and phone numbers of other people they have done the same procedure on so you can ask them questions (doctors usually have references and are more than happy to provide them...if they don't, then I would question why)...anyway...I know that I have been caught up in the notion that doctors are the end all and know everything...but it is still your/our childs body/welfare and we have the right to know exactly what is going on and our right to another opinion to make sure everyone is in agreement with how and when to start any procedures. This is certainly a wonderful place to ask questions and I have learned a great deal from reading all the entries...thank you..