Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Hello to you all, I am considering laser eye surgery to correct a life time of bad astigmatism and have a made an appt for an intitial consultation to assess my suitability. I understand that only 1 in 5 people are suitable for this type of surgery and as someone with bleph I wondered if someone in the group would know if our eyes are suitable or not? blepharophimosis Re: POF, Menopuase and Osteoporoses G'dayI too have also only found out that I have Bleph and I understand there are 2 types. As I have just had a daughter I naively assumed POF only effected the type where females cannot have children at all, am I wrong? I have an appointment with a geneticist in a few weeks and hope to get some answers there but thought someone here might know. Sorry I couldn't help with your question B, but I will say this, if I wanted a test and the doctor wouldn't let me have it I would go to another doctor. How dare any person in the medical world deny you any test that you have asked for! Especially when there is a family history of it.I hope you get the tests you ask for soon as I'm sure it will give you some answers.> >> > Hi> > > > I am after some advice.> > > > I am 29 and have BPES. About 2 years ago I was trying for a > second > > child with no results so my GP began blood tests at various times > in > > my menstrual cycle then referred me to a fertility specialist who > in > > no uncertain terms told me to go away and get on with my life as > it > > wasn't going to happen as I had POF; he had no ideas what BPES was > > barr the 5 minutes he had taken to read my notes prior to meeting > > me! There was no option for any investigations or scans and I was > > too distraught to question this.> > > > In the past couple of weeks I have begun to get a red hot face and > > neck for a few minutes and then it clears so I am going to book > > another appointment as I fear an early onset menopause. My > > Grandmother had terrible osteoporoses and my aunt on the same side > > has terrible bone structure so I am terrified as I have low > oestrogen > > but my GP refuses a bone density scan as I am only 29.> > > > Anyway the point of this post is I am really interested to know of > > other women's experiences as I feel somewhat despondent that my GP > > and local hospital have no idea what they are dealing with and are > > happy to treat me dare I say "normally" when they have no idea > what > > it is they are dealing with!> > > > Thanks> > B xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Hi I am interested to hear about this … it is something that I have wondered about. I have not found out about it but I plan to do so. So please will you tell us the outcome of your consultation? I am sure each of us is different and what applies to one of us may not apply to others. Regards Shireen Mohandes London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of JULIE IKEN Sent: 09 March 2008 23:15 blepharophimosis Subject: blepharophimosis Re: laser eye surgery Hello to you all, I am considering laser eye surgery to correct a life time of bad astigmatism and have a made an appt for an intitial consultation to assess my suitability. I understand that only 1 in 5 people are suitable for this type of surgery and as someone with bleph I wondered if someone in the group would know if our eyes are suitable or not? blepharophimosis Re: POF, Menopuase and Osteoporoses G'day I too have also only found out that I have Bleph and I understand there are 2 types. As I have just had a daughter I naively assumed POF only effected the type where females cannot have children at all, am I wrong? I have an appointment with a geneticist in a few weeks and hope to get some answers there but thought someone here might know. Sorry I couldn't help with your question B, but I will say this, if I wanted a test and the doctor wouldn't let me have it I would go to another doctor. How dare any person in the medical world deny you any test that you have asked for! Especially when there is a family history of it. I hope you get the tests you ask for soon as I'm sure it will give you some answers. > > > > Hi > > > > I am after some advice. > > > > I am 29 and have BPES. About 2 years ago I was trying for a > second > > child with no results so my GP began blood tests at various times > in > > my menstrual cycle then referred me to a fertility specialist who > in > > no uncertain terms told me to go away and get on with my life as > it > > wasn't going to happen as I had POF; he had no ideas what BPES was > > barr the 5 minutes he had taken to read my notes prior to meeting > > me! There was no option for any investigations or scans and I was > > too distraught to question this. > > > > In the past couple of weeks I have begun to get a red hot face and > > neck for a few minutes and then it clears so I am going to book > > another appointment as I fear an early onset menopause. My > > Grandmother had terrible osteoporoses and my aunt on the same side > > has terrible bone structure so I am terrified as I have low > oestrogen > > but my GP refuses a bone density scan as I am only 29. > > > > Anyway the point of this post is I am really interested to know of > > other women's experiences as I feel somewhat despondent that my GP > > and local hospital have no idea what they are dealing with and are > > happy to treat me dare I say " normally " when they have no idea > what > > it is they are dealing with! > > > > Thanks > > B xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 Hi I have written an email to Hardy, who used to work at Moorfields Eye Hospital, to see if he can help. Let’s see what he says. More later Shireen Mohandes London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of julie Sent: 07 May 2008 23:39 blepharophimosis Subject: blepharophimosis laser eye surgery Here is a question for one of the many doctors who are members of this group ... do you know if 'light sensitivity' would affect suitability for laser eye treatment before I let some professional with little or no knowledge of Bleph mess with my sight? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 Here you go – this is just what we wanted to learn. From: Hardy Sent: 14 May 2008 10:29 'Shireen Mohandes' Subject: RE: a question you may be able to help us with Dear Ms Mohandes, Good to hear from you – I hope you are well! One of the main potential problems with congenital ptosis of any type is that the cornea (front clear window in front of the iris and pupil) can get a little dry, especially if the eyes do not close properly. This could certainly cause problems and increase the risks after laser refractive surgery. The ophthalmologist should be well aware of this potential problem. The difficulty with sunlight is a common symptom of drying of the cornea, so well worth pointing out to the ophthalmologist. If by short sighted you mean that she needs glasses or contact lenses to improve distance vision, then laser surgery may be helpful. If it is to correct near or reading vision, then probably not worth pursuing, but ask the laser refractive surgery specialist. The bottom line is that one should mention these concerns to the eye care professional. I hope this is of some help. By the way, the research is coming along – I am trying to put together the final details In readiness for publication. I will endeavor to contact you when it is in print. Best wishes, Hardy From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of julie Sent: 07 May 2008 23:39 blepharophimosis Subject: blepharophimosis laser eye surgery Here is a question for one of the many doctors who are members of this group ... do you know if 'light sensitivity' would affect suitability for laser eye treatment before I let some professional with little or no knowledge of Bleph mess with my sight? Quote Link to comment Share on other sites More sharing options...
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