Ignorance

Hello, I have DRY AMD, I was diagnosed last year and still find it very frightening! I have tried to do my own research and every where I come across the same statement. "If AMD is diagnosed in time, then with the right supplements and change of life style," (in other words, getting as healthy as you can, ie giving up smoking, going to the gym, eating healthy) you can slow down the progression of AMD. My question is, why wasn't I told I had AMD until it was in the ADVANCED stage! I have spoken to the optician who couldn't give me a straight answer, it was his own college who informed me it had been spotted (by the other optician) 2 years previously. At the time I wasn't living a healthy lifestyle and would go as far to say I had a sugar addiction (some research suggests this can bring on AMD, not in everyone who has it, its not a case of "One size fits all") Had I been told in the previoius eye test I could and would of, made the life style changes there and then! I've spoken with another optician who told me AMD "Gets everyone in the end" (everyone who has it that is). I had wanted to hear something positive as I had told her I was taking certain supplements, going to the gym and eating healthily. She is wrong! I have just read a book by a doctor in America, he states that he knows of 9 people who managed to reverse AMD by eating certain foods. The book also explains how AMD can be slowed right down " Providing it is caught before the Advanced stage!" There is too much ignorance and lack of compassion, within the optometrist profession, towards people with AMD. When I was told I had it, it was as if I was being told I had an in growing toe nail!. I'm waiting for test results coming back from Canada to inform me as to wether or not the AMD I have is genetic. Also the test will tell me if I'm sensitive to ZINC. It has been discovered that if a person is sensitive to ZINC then they shouldn't be taking it in a supplement as this can accelerate the condition from DRY to WET. I hope some of the information I have shared will be of help to anyone reading it. Best wishes Pauline Rogers

[Hidden]

I had an OCT test at both Optician shops, not sure what title each person went under, however if they are Opticians then surely they should of referred me. As one of the two I saw also works at the eye hospital I think it safe to say I have seen both Opticians and Optometrists, ? What ever title they come under, I have been treated abysmally by both professions. I have not given all the details in my first write up as it is only reliving the horror. I have spoken to many people who are of the same opinion . I have been in contact with the OCCS who after hearing my FULL experience are dealing with the case. For the record, I used the term Optician loosely, as an Umbrella of all in the eyecare profession. There was no need for your lesson in who does what, I can Google that , buy hey , thanks for taking the time !

[larfalottie]

Hi Pauline it's the same here for me too. I wasn't informed. Strange to be reading your posts tonight as only yesterday I walked into a High Street Opticians (chain) I've attended for eye tests these last few years... more in a moment on that. They'd sent a reminder for an eye test due.

Meanwhile my husband's had an eye problem and went to a local hospital-linked Optometrist who set up independently and, impressed by the thoroughness and approach, suggested I had my eye test done there. So I did. And left totally stunned with a diagnosis of AMD both eyes and a carton of Macushield Gold capsules in my bag... Time wasted in not knowing sooner!

So. When I was passing by the usual Optometrists yesterday I felt impelled to speak to him directly and to not keep my head down or stay silent like some sort of victim; someone not worth taking time over.

His answer was he didn't tell me because most people at this stage have eyesight for some years ahead yet! I hope I got through to him. He apologised. I hope he reconsiders his non-action and will engage earlier in future work. I am no longer on his list.

My elderly mum is registered blind since her early 70's. I've been in on her journey with her so this is scary and for real. It's so wrong not to empower someone with all the facts and support possible.

Thank you for messaging me Pauline

[Hidden in reply to larfalottie]

Hi Nainis

It makes me so angry that these so called professionals are not educated enough to know that informing people at the early stages can most certainly help (research proven many times!) slow down the progression. There is info on this on the internet, I suggest you look for some . It appears I'm not allowed to pass certain info to you re what books to get, but there are plenty out there on the subject. Also find the company who do the Genetic testing (Canada) to see if you are Zinc sensitive?

[larfalottie in reply to Hidden]

I'm glad zinc ref came up, wasn't aware to take that caution at all (would have been more likely to up zinc intake intentionally) so thanks for reminding me. The reading info's tough right now but appreciate your helpful prompts; some days I can take on board looking up HealthUnlocked, Macular Soc., etc and on others I really do have to try not to 'go there' and create an artificial breather if I can. Is it like this for you?

... Thanks Pauline

[Hidden in reply to larfalottie]

Yes, I have days, weeks whereby I don't wish to "Go there". I tend to pick my times. Dont kniw if thus is any consolation, Judy Dench, Steven Spielberg (Speilburg?) hsve AMD. I sometimes get inspiration when I see how active she still is considering she can no longers resf her scripts.

[larfalottie in reply to Hidden]

Thank you for that x

[Hidden in reply to larfalottie]

Try this too godforeyecare.com

[larfalottie in reply to Hidden]

I can't find goodforeyecare.com and also failed on a google suggestion foodforeyecare.

Thanks for taking the time for me

[Hidden in reply to larfalottie]

it's GOD..... so its godforeyecare.com

PS Any time !

And here is my email address [e-mail] let me know how you get on.

[RP1944]

HI Pauline, I was just told some years ago by optician that there's something going on we need to keep an eye on, and that was it! I had been going to this optician for years for my glasses. I changed opticians who told me I had dry AMD (this is several years ago) and if I saw wavy lines to go straight back to her, (this is when it's changed to WET) which I did and was referred to local eye clinic which resulted in injections. Have had 10 injections over the course of nearly 3 years. I was surprised at your statement about zinc, as I had heard it helped AMD and have been taking zinc along with Vision Ace. Hopefully all your healthy living will help and WET AMD doesn't happen for many years . Good Luck.

Rosalind.

[Boxnox7174]

I have never been given any information on diet or life style to help with AMD dry

I was given a chart with squares and told to come back for my yearly check up

next year. Thank you for this information.

[fed12]

It seems the more I read in posts that Opticians, (I use the umbrella word too), vary enormously in their competence/thoroughness of investigations. Also, are they afraid of telling us about out AMD because they don't want us to get such a scary/nasty diagnosis.? They could say as above "come back immediately if you see wavy lines". I'd much rather be told and prepared. I wish I'd been able to recognise the early signs, (in my case seeing a "red sun", as if I had a permanent bleached spot when I closed my eyes. Does this make sense to anyone?). I had noticed this dark spot in front of on of my eye and I reported all this to my optician, and yet even tho' I was 74 she didn't photograph my retinas. I know I've banged on about this before. All she said was I should make sure I had a good reading light.

A competent optician will photograph the retinas routinely of all clients in their 70s onwards. Why aren't opticians more aware of AMD? Sign the Macular Soc. petition to raise awareness of AMD. There is a link here in the posts, or contact the Macular Society for details. I hope this helps. All the above info' re. health and life style/diet/supplements to take or not to take should be out there in the public domain!!!

[Hidden]

its absolutely unbelievable how this is happening!! I too was just handed an Amsler chart and sent on my way, and yet I had a prescription on order for sunglasses (to the tune of £170) . No one at the Opticians (famous chain) thought to tell me they were unsuitable for someone with AMD , not enough protection, the sun gets in at the sides and the top. Its disgusting how they are not researching enough and passing more information on to people. America and Canada seem far more advanced in their research than the opticians and such, in the eye care field, than any one in the UK. Or maybe they are more dedicated, I'm afraid it appears to be the latter!

[tallyho in reply to Hidden]

I do think it makes a difference to where you live. I don’t go to a well known eye hospital on the UK but a very well used and respected one o the South East and the care there is brilliant. I have 4 different things wrong with my eyes so am there often and they are also so thorough and take time to explain all that is going on. I don’t always think The US and Canada are better to be honest there are good and bad hospitals all over the place. I am fortunate enough to be allowed to attend events usually only professionals attend and their is actually a whole load of research that is going on I also help at a London university every Monday as a volunteer patient and the students dedication and their teachers ( all qualified ophthalmologists) is fantastic. They are all so eager to learn the theory, practice and what it is like to have DMO, cateracts, ocular hypertension and double vision. Unfortunately now we are no longer going to be in the EU funding for such research is going to go down but that is in all medical areas not just Ophthalmology.

Eye sight is so precious I lost mine in my early 40’s I am unemployed now ( 5 yrs and lost my driving licence ) life is hard but I am actually quite encouraged at what we as a country are doing to expand knowledge. Moorfields have a great one day event once a year where they open up their research department to the public this is always well attended and very interesting.

[alison-g]

Google Dr, Kondrot. I'm not a patient of his but I used supplements and microcurrent and the improvement has been documented by my vitreo-retinal specialists.

[Hidden in reply to alison-g]

Thanks for the tip. I googled Dr Kondrot and I have booked on for a webinar tomorrow at 6pm. "Macular Degeneration can be Reversed". We need more of this instead if the outdated reports people like to keep reiterating!

[alison-g in reply to Hidden]

Many non-profits are actually funded by pharmaceutical companies. I have no financial ties to anyone. Those with financial ties are actively suppressing information. I'll stop here before I find myself thrown out of this group and wish you much luck a good health!

[Hidden in reply to alison-g]

I know and understand exactly what you are saying.

[rosyG]

I take Macushield but the reason we are not advised to do this is, I think, that the studies showed it's not much help for mild AMD but may help at a later stage ( hope I've got this the right way round!!)

[Rosalyn-helpline Partner]

Dear pauline1957,

Unfortunately we still commonly hear on the Macular Society helpline that individuals are only informed of their condition when they have had it for some time and then they are frequently not given any information, other than perhaps being advised to take a supplement.

We do have free professional membership for opticians practices, eye clinics etc., with the aim that individuals are given information at the point of diagnosis:

macularsociety.org/become-p...

Dry AMD is primarily related to the ageing process and is more common in individuals over the age of 55 years. The deterioration is generally slow and over a period of months and years. However, how fast and how far the condition deteriorates is variable between individuals. There is currently no treatment for it, however as you are aware, we talk about the importance of lifestyle considerations which can hopefully have a positive impact on eye health and potentially slow down the deterioration a little. Therefore, for instance, exercise is good for eye health in addition to general health. It is important to try and maintain a healthy weight, keep blood pressure under control and avoid smoking. Research indicates that being careful with regard to nutrition can also potentially have a positive impact on eye health as well as general health. It is also important to consider protecting the eyes from the harmful effects of the sun. Optometrists do not generally refer individuals to an ophthalmologist for the dry type.

I am copying links to our booklets on Nutrition and Protecting your eyes. Please contact us directly if you would like to receive suppliers details:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

10-15% of people with the dry type go on to develop wet AMD in the same eye. Therefore it is important that if an individual does notice any sudden eye changes, that they act rapidly and go to the optometrist so that they can check behind their eyes. Alternately, they can attend the emergency eye clinic usually located within the hospital. If the optometrist identifies possible wet AMD, then the Royal College of Ophthalmology guidelines indicate that they must do a fast track referral on the day of the appointment, via fax or email, straight through to the eye clinic, so that the individual can be seen and treated by 2 weeks. This therefore indicates the urgency of the situation. Treatment is usually via injection. It is wise to check an Amsler grid weekly to help gauge any sudden changes.

There is an Amsler grid on p. 21 of our Guide to AMD; link copied below:

macularsociety.org/sites/de...

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

Please do not hesitate to contact us if you would like to discuss any aspect of your concerns with us further. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,