Change of Speaker for Next Meeting (10th August)

Announcements from the West Midlands local group

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John Thatcher
Regular contributor
Regular contributor
Posts: 56
Joined: Mon 24 Mar 2008 1:49 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Change of Speaker for Next Meeting (10th August)

Postby John Thatcher » Sun 09 Jun 2019 12:00 pm

Unfortunately, owing to problems with delayed house moves, our next speaker (Professor Martin Rubinstein) has had to postpone his talk until next year and hopes to make it for our spring meeting. Instead, I will speak about sighted guiding and the 'My Guide' service offered by Guide Dogs; something I do as a volunteer and not least because uncorrected KC provides some understanding of living with vision problems. It may therefore be an activity that you may like to consider as a way to help others if appropriate (but let me stress this is a talk for information purposes and not a recruiting activity). The meeting will of course be the usual chance to meet up with old friends and say hello to any newcomers who are always welcome. More details to follow nearer the time, hope to see you there.
John

Jolly Roger
Regular contributor
Regular contributor
Posts: 59
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Change of Speaker for Next Meeting (10th August)

Postby Jolly Roger » Sun 11 Aug 2019 1:27 pm

Thank you John for what you do for OUR charity keeping the West Midlands Group going and your informative empowering talk yesterday (I never knew for instance about the signs of distress/requests for public assistance made by those designated blind with white sticks so when I see them I will be able to react positively).

Great venue (like the fact that it is outside of the NHS) although a bit small but adequate for the smallish audience ( expected higher attendance especially in view of the large urban area covered). Great to connect with other KC members and engage with OUR charity's new Chair (a challenging and very responsible position) David Gable.

The future looks brighter based on the evidence I saw, lets see what happens.

Jolly Roger
Regular contributor
Regular contributor
Posts: 59
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Change of Speaker for Next Meeting (10th August)

Postby Jolly Roger » Sun 11 Aug 2019 2:03 pm

For the record my above post was published immediately following submission, without obstruction (referral to moderation) but my others in the general forum were obstructed and referred to for moderation.

Jolly Roger
Regular contributor
Regular contributor
Posts: 59
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Change of Speaker for Next Meeting (10th August)

Postby Jolly Roger » Wed 14 Aug 2019 10:43 pm

With respect based on the evidence on OUR charity's forum the "Anne Klepacz keratoconus self help and support association" would be a more apt name for OUR charity's forum.

Jolly Roger
Regular contributor
Regular contributor
Posts: 59
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Change of Speaker for Next Meeting (10th August)

Postby Jolly Roger » Sat 17 Aug 2019 2:39 pm

Heres what I posted on this topic on 13 August "Awaiting a corneal transplant" its not seen the light of day so hers what I posted. Hope Gemma reads it. Sorry Gemma but also disabled on here from pming you and everyone else. How many other posters receive the same treatment? 40 views and only one reply from the KC oracle. This forum is dying me wonders why?

viewtopic.php?f=1&t=16691

Hi Gemma

I hope that you get this message. I would like to send you a private message or an e mail but the PERPS who run OUR charity have disabled this without my consent and without a valid true reason for doing so.

I had a DALK corneal graft on my strong right eye in 2013 at Manchester Royal Hospital after being diagnosed for bi lateral KC there in 1983 during my final year at University. I had to have a graft as the small uncomfortable rgp lens (a Rose K) the MREH optom department had prescribed had scarred my cornea. For the period 1983 - 2013 most of the time I had never worn the small unsuitable uncomfortable rose k rgps they had supplied which is probably the reason I lasted so long without a graft. I have dry eye and have tried all those you have tried to resolve this. Fact is mother nature never meant our corneas to have pieces of plastic stuck on them!

The contact lens which minimises the risk of scarring and is the most comfortable is the scleral or semi scleral lens which sits on a pool of saline solution which forms part of the lens correction and most importantly prevents any corneal abrasion as the outer edges of the lens sits on the white area of the eye surrounding the cornea.

These lenses are the most expensive contact lenses which is why I believe all NHS eye hospitals rarely prescribe them. False economy in my opinion as by failing to do so they are increasing the risk of corneal scarring and the inevitably of invasive risky surgery - a corneal transplant which costs a huge 4 figure sum in pounds sterling.

I would only recommend a graft if its absolutely essential to enable you to live your life. I had no choice I needed to be able to continue to drive and pay the bills. If I was retired and had sufficient money to afford to live even basically I would never have consented to it. When you speak to people like Lea (Space Cadet) on this forum etc you can understand why.

There is a risk of infection and rejection with all invasive surgery/transplants which is managed with steroid eye drops and drops to resist infection, after the operation. There are two types of transplant a DALK or PK, less risk with a DALK but the visual outcome with PK is usually better), the new cornea is secured in place by 16 stitches. Mine were removed 16-18 months later. Out of the first 8, two of them broke on removal and they remain in my eye. The second 8 were all removed successfully by a superb confident young Australian student. Obviously you cannot wear any contact lenses until the stitches have been removed and cornea fully healed.

Corneal transplants do not last forever generally but some may do. After the operation you will no longer to be able to give blood or donate your organs.

Will you be able to see better after your transplant? I could but my vision was not above the driving level standard due to the astigmatism in the transplanted corneal so now wear a semi scleral lens to attain the standard. I had hoped to be contact lens free but this did not work out for me and I believe those who do are in a small minority. These stats should be made available but sadly they are not and OUR charity sadly has no intention of pursuing these stats The eye hospital definition of success is a transplant that is not rejected/infected, no consideration is made of the visual outcome!

I had to wait 18 months on the NHS waiting list after consenting to a graft at MREH. I believe there is a lower supply of donate corneas in the eye bank available than in 2013!

As a mother of four children, with a huge responsibility, my heart goes out to you and I do hope that you will find the professional healthCARE and SUPPORT you will need and deserve to come through this.

All the best and the best of luck. Please let us know how you get on.

Jolly Roger
Regular contributor
Regular contributor
Posts: 59
Joined: Sat 30 Sep 2017 10:11 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Change of Speaker for Next Meeting (10th August)

Postby Jolly Roger » Sat 17 Aug 2019 2:50 pm

Hi J

Thank you for your pm. Sorry I cant respond due to the PERPS who control OUR charity and OUR Charity's forum.

You are welcome to e mail me via this e mail address -
scw-vision@email.com

You can also read my other posts under Steven Williams and Bulls Eye.

Good luck and let us know how you get on. My optom Drew Thompson speaks very highly of Mr Cummings whom I had hoped to see whilst in Dublin last year for my sons wedding to see if he raise my standard of vision so i could discard the contact lenses but sadly there was just not enough time.

Best wishes


Sent: Fri 16 Aug 2019 12:08 pm
From: Junopops
Recipient: Jolly Roger

Hi Jolly Roger

I just came across your old post when you were asking about Laser after a graft with Mr Arthur Cummings.
I was wondering if you went ahead with that and what was the outcome?

I am going to see Mr Arthur Cummings in November for dry eyes but will chat to him also about laser. Although I don't think I will be a candidate.

Looking forward to hearing back from you.
Thanks


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