Macular Week at Moorfield raising awareness for us all

[Annsandra13]

I Thought it was interesting to see this article below from Moorfield

Moorfield is proud to celebrate Macular Week (24-30 June). Led by the Macular Society, Macular Week aims to raise awareness of macular disease, the biggest cause of sight loss in the UK. Around 300 people every day in the UK are diagnosed with macular disease, which causes the loss of central vision.

To mark the occasion, we have been reflecting on a ground-breaking clinical study we completed last year, where wet age related macular degeneration (AMD) patients were able to regain their sight after receiving retinal tissue engineered from stem cells. This was the first time a completely engineered tissue has been successfully used in this way and it is hoped that this treatment could be extended to also treat dry AMD in future.

This study was a key milestone in the London Project to Cure Blindness, a partnership between University College London and Moorfields Eye Hospital, which aims to bring stem cell therapy for retinal diseases, especially AMD, to the clinic as rapidly as possible.

Mervyn Walker, Chair of Trustees for Moorfields Eye Charity, who part funded this project with the support of generous donors, said: “Douglas Waters was the first patient to receive treatment for AMD as part of the London Project to Cure Blindness. I met Douglas and his wife recently at the unveiling of UCL’s major donor wall, and they told me that Douglas has fully regained his sight thanks to the treatment he received at Moorfields and described the huge impact that’s had on both of their lives.”

The Friends of Moorfields are celebrating Macular Week by joining forces with the Macular Society to host a series of information stands at our City Road site. These stands aim to raise awareness of macular disease and provide information and support to patients and healthcare professionals. These will take place on Tuesday 25 June, 10am-4pm and Wednesday 26 June, 10am-6pm.

To keep up to date with Moorfields’ activities supporting Macular Week, follow us on Facebook and Twitter.

It’s good to see new treatments are on the horizon!

Best regards to all

Ann

[Eyeproblems]

Thank you for posting this article.

[Emelinep]

Thank you for posting this really exciting news.

[tallyho]

Thanks for posting this but It would have been great to call it Macular disease week not just Macular week. Everyone has a Macular ( though some I know think that Macular is the name of the disease 😞). So many times I hear people say ‘ have u got Macular?’ It’s like saying men have u got prostrate ? Who says that!!!

Are they celebrating all Maculars during this week whether healthy or not I don’t think so. I wish people did not have such a hang up on the word disease, those with cancer and the charities don’t have a hang up on saying they have cancer.

Also looking forward to the time when money is spent on research in another disease not just AMD. Hoping that one day someone will do research on diabetic eye disease which affects a lot of young er people. That is also a Macular disease just like AMD.

[Whitegoose]

Hi everyone, I remember seeing on the BBC news last year, regarding the stem cell breakthrough. I mentioned it to my consultant, I have wet AMD, he said it would be years before it became available for everyone. I wonder if that has changed. I now have had my Eyelea treatment stopped due to my eye no longer being responsive. This treatment would be a godsend for me, and others in the same position. Let’s hope It becomes available soon.

[pinkperfection in reply to Whitegoose]

Yes I agree I find it very depressing that it takes so long to get new treatment available. There are so many of us with this horrible disease and keeping our sight is vital. Surely from NHS point of view the sooner we can get a cure the cheaper it will be for them not having to pay for costly injections. Can the Mac Society ramp up the pressure? Like you I don't seem to be responding to treatment and I fear they will probably stop at some point as well.

[Whitegoose in reply to pinkperfection]

I was discharged completely, even though I have dry in the other eye. After my husband complained to the hospital they agreed to see me annually. I must add that I do have very good vision in the eye with dry macular, which is in the early stages.

[Catseyes235 in reply to Whitegoose]

Sorry to hear your treatment stopped. Did they not suggest trying other treatments? How long were you taking Eyelea and did you start early in the disease?

My left eye has been treated nearly 3 years and right eye went from dry to wet last December and now having both injections every 8 weeks. However as eyesight good I was only offered Aventis in right eye. Results not so quick as Eyelea was but now fine.

[Whitegoose in reply to Catseyes235]

Hello Catseyes, I had a cataract operation, and after, I had the problem of the wavy distortion lines, 3 days later I was diagnosed with wet macular, coincidence or not, the hospital said not connected? My eyes until cataract operation seemed fine. Anyway, I was treated immediately with Eyelea injections monthly for 3 months, then every 2 months. After the 6 month period I’d have a check up. During this last check up I was told I was not responding to treatment and everything was cancelled. I’d had in total 11 injections., even though I had 2 more injections booked. I was stunned, anyway my husband rang the hospital and complained, they have agreed to see me annually.

I feel as my central vision has not entirely gone. The consultant said the cells were dead in my macular and could not be rejuvenated. I do have a small amount of dry in my other eye.

[Catseyes235 in reply to Whitegoose]

That’s so sad but I do hope your other eye responds well if it develops. I wonder what makes some respond well or was it too far advanced and the cataracts disguised the condition? I was talking to someone who had cataracts a few years and successfully treated she now has AMD and Glaucoma but was doing okay. Any chance of gene therapy? Are you in UK?

[Whitegoose in reply to Catseyes235]

Yes I am in the UK, and I have been in touch with Moorfields clinical trials, apparently I have to go to my GP first for a referral. So I will see my GP about it soon.

as I live in Lincolnshire, there will be considerable amount of travelling involved. I’m trying to sort this out first. It all depends if I’m accepted for a trial. I happy to be on a waiting list.

[Catseyes235 in reply to pinkperfection]

I’m afraid research takes years and there are no shortcuts. Money doesn’t necessarily make things go more quickly. My oldest brother lost his sight completely through AMD but that was 15 years ago so no to little treatment available and very expensive so I feel lucky my sight (and another brother’s) is so good.

I wish you the best for your treatment. Have you seen the later post from Macular Society re volunteering for research as treatments? All have to be tried out do and replicated on so many before being released for use.

[Whitegoose in reply to Catseyes235]

I have just filled out the form to subscribe.

[Catseyes235 in reply to Whitegoose]

Well done you! I am thinking about it but at the moment am leaving well alone. I went through several ops at Moorefields due to thyroid eye disease/ strabismus etc, 29 years ago when it felt like a second home so ending up with AMD was rather depressing though am lucky compared to my brother who lost his sight when treatment not available. People travelled from quite a distance for treatment but they do have offshoots at other hospitals.

All the best..

[Whitegoose in reply to Catseyes235]

Hi Catseyes, believe it or not, after my last post to you, I have had a trial sent to me from Moorfields by email, I took the email up to my doctors surgery, and asked him to refer me, so I’ll keep my fingers crossed. It’s in Sheffield, so travelling involved. The trial is called Macustar it’s for advanced wet AMD. I’ll keep you informed, it’s a 4 year trial. they are recruiting in several European countries.

[Catseyes235 in reply to Whitegoose]

Excellent ..do hope all goes well and look forward to hearing further developments.

[pinkperfection in reply to Catseyes235]

Thanks Catseyes for your reply. I know research takes a long time and they need to be cautious but I still find it frustrating. I will look at the Mac website but I suspect I will not meet the criteria.

Hope all goes well for you.

[RosMacularSociety Partner]

Dear Annsandra13,

I have copied a link to the Macular Society home page. This has a news section which also features information about research and trials.

This is a link to the information on our research strategy and current research projects:

macularsociety.org/research

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments:

macularsociety.org/6months

Please do not hesitate to contact us if we can be of any further help.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Whitegoose]

I have just filled in the form, pressed the submit button, but it appears not to have worked.

[Whitegoose]

It’s now worked.