Premature Ovarian Failure - Help!

[Guest guest]

I have type 1 BPES, and at 24 yrs old am going through premature

menopause. Does anyone know of any good links or info that can help

me with such things as the facts about pre menopause, diets, and

exercise.

Thanks

Rebekah

[Guest guest]

Hi Rebekah,

Welcome to the group:)...Where abouts in NZ are you??? I am in Christchurch, unfortunately so far the other members are all up north, so you probably are as well:), I would love someone to be here in CHCH:) anyways, we have a beautiful son Ethan with blephs, he is 18 months old today actually! we have a 5 year old as well, but he doesn't have it, neither do myself or my husband, so we have no idea where it came from? So a big surprise when he was born:) At first the Dr's said his eyes were just swollen from the birth, so after a day or so, we got a tiny peak of some blue eyes under their, but never much more, when Ethan was 6 weeks we found out what it was called etc... He will have surgery when he is about 4 years old, before he starts school, he has his 18 mth check up this thursday actually with the opthalmologist, he is doing perfectly! comparing to our 1st son:) he runs into doors and stuff quite a lot though:(

Have you had any surgeries so far? If so how many? Do you have other family members with bleph? Would love to see pix of you, we have pix of Ethan at the site, his are the ones of the baby Ethan, wearing pumpkin outfit etc...there is another Ethan who is 5 years old from Hastings-NZ also, coincidence ha! It's so nice to hear from other people with blephs in NZ, makes you feel your not the only one...

Look forward to talking later...Bye.

Leanne and family (CHCH)

-- blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah

[Guest guest]

Hi Leanne, great to hear from you. Yes I am also from up north. No one else in my family has it, but me. I have had 7 surgeries, one when I was 3yrs, 4yrs, 6yrs, 12yrs, 17yrs and two at 18yrs. I have a pic of me on the site. I have had all my surgeries done at Waikato Hospital by Dr Patrcik Beehan (retired), and Dr Stuart McNicoll. They have never done surgery for a BPES patient before so I was like there guinea pig. They are absolutely wonderful though and have done a great job. Anyways, have to go to work, so will talk to you soon.

Rebekah

blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah

[Guest guest]

Hi Leanne.. Hope all is well with you guys. Ethan doing well at school and having a blast... Take Care

Leah

blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah

[Guest guest]

Hi Rebekah,

Sorry I didn't get back to you sooner, havn't been on in a few day's. Well Ethan had his 18 mth check up today, and they checked his eye sight, they were very happy with it, no problems luckily with his sight, the opthalmologist *Dr Weatherhead* has said when he is 2 that he will probably need a temp ptosis lift, he said it should last about 18 mths, just to open up the eye a bit more than it is, he said he doesn't have enough movement on his top eyelid, so having the lift will ease that:) he said about doing the op when they take the piece from the leg at about age 6ish when he is older and more developed, we will take it as it goes, but he is happy with him so far:)

I can't believe u have had 7 surgeries! is that usual to have that many? I can see by the pic that your eyes have the creases now, and did you have the epicanthal folds done? it looks like you have, do u have cupped ears? Ethans right ear is cupped over at the top:) its cute though.

I don't know if you saw a documentary a few weeks back about people born with facial abnormalities, one of the lady patients had a severe facial disfigurement, and actually it was our Dr Weatherhead who did the eye surgery for her, that made us feel quite good about his expertise. Anyways will go for now, oh, where in the nth island are you anyway? bye.

Leanne and family.

-- Re: blepharophimosis Premature Ovarian Failure - Help!

Hi Leanne, great to hear from you. Yes I am also from up north. No one else in my family has it, but me. I have had 7 surgeries, one when I was 3yrs, 4yrs, 6yrs, 12yrs, 17yrs and two at 18yrs. I have a pic of me on the site. I have had all my surgeries done at Waikato Hospital by Dr Patrcik Beehan (retired), and Dr Stuart McNicoll. They have never done surgery for a BPES patient before so I was like there guinea pig. They are absolutely wonderful though and have done a great job. Anyways, have to go to work, so will talk to you soon.

Rebekah

blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah

[Guest guest]

Hi Leah,

Glad to hear that Ethan is doing good in school! Hows the toilet training coming along with him? How is it with school and the kids, do they notice? Ethan had his 18 mth appt today, I took a few pix from the photos, and one of your Ethan, our Dr (weatherhead) knows of your Dr:) he said that ethans ptosis lift has lasted well, he wants to give our ethan a temp ptosis lift when he is 2 now, he said it should last about 18 mths...hopefully longer looking at your ethans results:) anyways, how are you just loving this cold weather! its great ha....not:) talk laters, time to check dinner and get the boys ready for tea and bed...night.

Leanne.

-- Re: blepharophimosis Premature Ovarian Failure - Help!

Hi Leanne.. Hope all is well with you guys. Ethan doing well at school and having a blast... Take Care

Leah

blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah

[Guest guest]

Hi Leanne, sorry its taken ages to reply but have been away for the last couple of nights. I will try and tell you about the surgeries I have had, but I have no recollection of the ones I had when I was a toddler. I do have a copy of the doctors notes in front of me but there writing is really hard to read. Anyways, my first was at 3yrs where they "corrected blepharphimosis by 'jumping man' incision with division of medial palpebal ligament and shortening with attachment to nasal something", at 4yrs I had the correction of bilateral ptosis (lid fold). At 12yrs I had correction of prominent ears, cartilage augemtation to radix & supraorbital ridge, and lateral supercillary brow lift. Then at 17yrs I had a forehead, glabella and dorsal nasal cranioplasty. I had another operation that same year which was a costal cartilage grafting to congenitally enophthalmic right orbit (in english, I had cartilage removed from my ribs and placed behind the right eyeball to bring the eyeball forward more, by 2-3mm). 6 months later I had the same operation on the left eye as well as the right eye operated on again to try and bring the tear duct closer to the eyeball to help with the watering of the eyes. A year later I had Bilateral ptosis repair by levator advancement and bilateral medial canthoplasty. (Deep ligament reconstitution by Mitek anchor) on both eyes. Thats the last operation I had, and am actually still on the waiting list to have the left eye operated on for the watering of the eyes. Mum and I were always told that there wasn't much the doctors could do while I was young as the bones weren't fully developed (you know, still heaps of growing to do). The operations I had when I was older, where pretty intense, but have really helped with my appearance. I don't have cupped ears, and I don't know if its usual to have this many surgeries, but I have heard so many surgeries where they take skin grafts for whatever reason. I've never had that so can't understand it. I live in north taranaki, and you?

However, I think I have babbled on, so I'll let you absorb all I have written.

Bye for now.

blepharophimosis Premature Ovarian Failure - Help!

I have type 1 BPES, and at 24 yrs old am going through premature menopause. Does anyone know of any good links or info that can help me with such things as the facts about pre menopause, diets, and exercise.ThanksRebekah