Quicktopic posts: Sep 2002

[ali cooper]

Thanks Freddy!

Thanks for your reply on possible Thyroid/KC link. Can't remember if I mentioned in my last post but I have Hashimoto's which like Grave's is an auto-immune thyroid condition.

I too have tried on the thyroid sites to ask if others have the link and I have had no replies from my post. My consultant too said I was unlucky but I just think that it is too big a coincidence that after being diagnosed with thyroid disease I get diagnosed with KC.

I too started with KC in my left eye and I have just started showing changes in my right I too. I really do think it would be an interesting study to find out if there is a link. Let me know how you get on with your thyroid and your KC.

Take care,

Ally.


>From: QT - Freddy Bull <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: Sun, 15 Sep 2002 09:40:43 -0500 (CDT)
>




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< replied-to message removed by QT >

[Dal]

Hi all

Well visited the doctoe this morning and he's written a letter to my local hospital, so I guess I'll just have to sit and wait!

I already have a pair of soft contact lenses and I find that wearing those is better than my normal specs. Why is this, does anyone know?

Dal

[Sue Ingram]

Hi Laura (957), Welcome to the Site. I am sorry that your GP is not being very helpful. If is definitely he who needs to refer you to a hospital so that you can get the contact lenses you require for your vision. I think you are going to have to start pressing your GP to make sure he writes the appropriate letter for you. Where do you live? If you can get to Moorfields Eye Hospital in London then please ask your GP to refer you to Professor Buckley's Clinic at MEH. If not, I assume it will have to be your nearest hospital with a specialist eye dept. I cannot think of much more to suggest - your GP MUST refer you so that you can get into the system. Good luck and let us know how you get on. SUE

[Sue Ingram]

Hi Dal (962), I THINK it is something to do with the tear film that is collected between the cornea and the lens which helps KC sufferers to see, so although the soft lenses mould to the shape of your eyes, they still have the tear film which the lens sits on, which in turn then helps to correct our vision, but this is more effective with rigid corneal lenses or scleral lenses - its all a bit technical for me! Obviously, this tear film is not collected when you wear glasses. Someone please correct me if this I am wrong! Good luck and let us know how you get on with your new contacts once you get them. SUE

[Ulka Patel]

to all who have participated in the thames path walk. its great you all are doing so much for KC. i wish i could have been in uk to be avle to support you all. (im in india)
all the best for the last day and hoping to see your photos soon on the web site.

ulka


>From: QT - Tony Stigle <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: ulkanp@hotmail.com
>Subject: Keratoconus
>Date: Sun, 15 Sep 2002 12:21:56 -0500 (CDT)
>



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< replied-to message removed by QT >

[payne family]

Hi Emma

I was so pleased when I read your email. I have had problems with my eyes for years but have not been diagnosed with KC, I also have problems with mobility due to excessive scar tissue. I go to Bradford Uni to a special eye clinic every 6 months (I think because I have got something they like the students to look at!)

My children have been screened at Bradford for their eyes since they were born. My eldest is OK, my second was diagnosed with KC at 4 years old (very young) and my third was diagnosed with Ehlers Danlos Syndrome (an illness caused by a defect in callogen) at 2 years old which leaves him in a wheelchair, easy bruising, easily dislocatated joints and a lot of pain.
I find it such a coincidence that all our conditions are linked but although the medics will say that there may be a link nothing has been proved and is often discounted.

Regards
Deb


< replied-to message removed by QT >

[Laura]

Hi Sue Ingram, Unfortunately I live no where near London, I live near Bradford in West Yorks. There is a specialist of KC in Bradford but he is way too expensive but theres a possibility I could be transfered to him later on. I am off to see my doc tommorow so I'll let you know!!

[Amanda Stigle]

Hi Deb Payne
Sorry that you and your family seems to have had more than your fair share of medical problems. But the collegen factor is very interesting! Has anyone in this field of research approached you, apart from Bradford Uni., or are they in contact with other relevant reasearchers?
You can e-mail me on astigle@aol.com
Hi Laura
If you go to the main menu and then click on the contact page you will see there are several people happy to be contacted who live in your area, they may be able to help.Good luck.
Also if anyone wishes to e-mail me regarding their treatment at eye hospitals in this country I am happy to file this info.

[Tony Stigle]

Hi...
Fazana B Lives in Bradford.. As Amanda has said Details are on this groups website. http://www.keratoconus-group.org.uk.
These QuickTopic pages are brought to you by the group. The web site has loads & loads of pages to help.

As you can see from the messages these is a SPONSORED WALK on that is being done by members of the group to raise funds for all the UK keratoconus Self Help and Support Group
work... Details of all the groups activities are ..guess where! on the site.

This site is constantly being developed and expanded. I am interested to hear of any ideas for the site & your contributions are welcome... Contributions should consist of the information you would like to be considered for inclusion & not a list of search engines where I go to look for it!

Its a pleasure writing & updating the site and being able to contribute some way to the group. I look forward to that time of the day when I can get on line to have a look around, however the site would be better for some contributions to the "Key words used " page.

I have recently added a new counter. Its accessible via the little multicoloured patch next to the digital counter on the main page.. Have a look.. It tells you who is on line & from where.. loads of stat's about the site...

Keep well you all & I hope I get to here form you soon. May be we will meet in London Tonight.. Tower Bridge. South Side. 5.00 PM...

Tony

[Tony Stigle]

They have Done IT....

I have Just heard from Mike at the finish.. Unfortunatly Amanda & I was unable to get to London to see them.
Very Very Sorry every one there....
Check out the photos..on the web...
Make your pledge on here to encourage others.. E.mail Mike on mikekeratoconus@aol.com

Tony