I want to try sclerals,but have some problem

[Zhang]

Hi, everyone!
25 male chinese
Just 3 months after Graduation from university and got a jop,I I am out of work due to the poor condition of my eyes.Then they get worse.The doctor told me that I have meibomian gland atrophy--an incurable disease.Rapid evaporation is my major problem.Sometimes, even when wearing goggles i almost can not open my eyes.Do you think sclerals can help me?
I should go to Boston immediately and have a try if i am rich.But i am not in good finantial condition due to out of word for almost one year.So i want to know how much money i will pay for sclerals before i go to USA.
I have sent several emails to BFS but get no response.
I am sorry for my broken English.

Best regards,
F.Zhang

[littlemermaid]

Hello,

So very sorry to hear you have these troubles ~ you are not alone with this. Other members zhousu and Wang Xu were looking for dry eye treatment and scleral lenses in China - maybe you could send a personal message to see if they had any progress? http://www.dryeyezone.com/talk/showt...ighlight=china

Have you been to the Cornea and External Disease departments at the university teaching hospitals like Beijing or Hong Kong or Wenzhou? http://www.eye.ac.cn/wzeye/2-9.htm

My daughter's eye damage was wrongly diagnosed and treated for a long time by general ophthalmologists. We thought the meibomian glands had atrophied too. I wrote to the Cornea and External Disease specialists at the university hospitals for advice and help, describing only the symptoms not 'diagnosis', telling them how bad it was. One kindly offered to see her for diagnosis, took her on as his patient, and treated her very well. I am so grateful for this - although she suffered before, she is lucky now at last.

With warm cloth massage, oral antibiotics, antibacterial and FML steroid drops - the meibom is almost restored. With this regime and Celluvisc eyedrops 5/6 times a day, she is living a normal life. The general ophthalmogists could not achieve this for her. I am just wondering if you have had the best advice because it is strange that the doctor is so sure the glands are atrophied. Do other specialists think this?

If anyone is doing trials for scleral lenses in the medical research departments in China region, they might be using them to treat keratoconus - maybe search on that.

Scleral lenses in Nagoya, Japan http://www.eyeworld.org/article-taki...scleral-lenses This EyeWorld article talks generally about scleral lenses and shows the approximate cost.
Scleral lenses and dry eye treatment in Singapore http://www.snec.com.sg/clinicalservi...sServices.aspx
I know these places are difficult for you to access.

Did you try the Asia-Pacific Academy of Ophthalmology members' list? - may be useful to find specialists.

Did you try a PubMed search to find who is doing cornea research? http://www.ncbi.nlm.nih.gov/pubmed?t...na%20dry%20eye

I am so sorry if you have tried all this before, this does not answer your question about BFS at all. Warm greetings from London and very best wishes for good progress.

[Zhang]

Thank you very much for these informarion!
I have heard of Wang Xu.He seems to served in the army(If I am not mistaken),so he can not go abroad.But i can not find him now.
I think the scleral lens is difficult to introduce into China.Few chinese doctors interested in the scleral lens.
I was wrongly diagnosed before,it went worse.Finally,a doctor of Peking University Third Hospital (PUTH,it should be one of the best hospitals in China)told me that I have lost more then two-thirds of the fouction of my meibomian gland.
"warm cloth massage, oral antibiotics, antibacterial and FML steroid drops" I am afraid these method can help me.I have hot compress twice a day.There is no significant inflammation of my eyes.So doctor does not recommend me to use antibiotics.I am not paediatric rosacea.I wish I was!
I am sorry for my broken English,thank you once again!

[littlemermaid]

Hi!

There is no significant inflammation of my eyes.So doctor does not recommend me to use antibiotics.

Some doctors have improved MGD by using short courses of low-dose oral antibiotics like doxycycline, without seeing infection or inflammation, but no one knows quite why this has worked. Same with topical antibiotics and antibacterial ointments.

Do you know what might have happened to you to cause this? http://vsearch.nlm.nih.gov/vivisimo/...eibomian+gland

In case it helps you, by 'paediatric rosacea' I think her MGD might be caused by dermatology reaction/fatty acid metabolism, same as some adults with MGD where there is nothing obvious to see. Docs don't know why this is happening. I am trying to change the consistency of the meibom: using the above medications + improving diet by reducing fats, sugars and supplementing with omega 3 fish/flaxseed oil + reducing allergens in her environment. Without warm compress the MGD worsens within 2 days, but it does not improve the meibom consistency. Meibom has improved using all the methods together although she still has to use steroid drops 2 x week to control eye surface inflammation.

http://www.dryeyezone.com/talk/blog....s-Dry-Eye-Blog As Rebecca reminds us in her blogs feeding the latest research, other mechanisms also create the tear film and maintain the eye surface, which research centres are starting to look at. So maybe because docs have read about it recently, sometimes they jump to the MGD diagnosis without reading up on what drops may help heal the surface the best, for example, or considering aqueous production.

Do you want to tell us what eyedrops are available to you?

I don't want to give you the impression that treatment is more available in the UK or US, especially not paediatric! I hope you can find kind and interested ophthalmologists or optometrists in the hospital research departments in China who are current on treatment, and can continue to study this yourself. I think we are all struggling with this together.

With very warm greetings from London.

[littlemermaid]

Just wondering what you think about this doctor, Dr Z Pan, Beijing Institute of Ophthalmology. S/he is a member of the Stevens-Johnson Foundation, a very difficult condition to treat. S/he may be a good person to talk to about the severity of your dry eye and the possibility of scleral lenses. Dr. Z. PAN - Ocular surface - AMT - LSC-Tr E-Mail panxiaow@public3.bta.net.cn Beijing Institute of Ophthalmology, Beijing 100005 - China

[littlemermaid]

Hello, Zhang ~ Thank you for your personal message. It is very exciting that we can all use this wonderful dryeyetalk forum to share our difficulties and information. I wish more people would be so brave as you to do this. I hope you feel your international friends are with you, wishing you better comfort.

[Zhang]

Hello, Zhang ~ Thank you for your personal message. It is very exciting that we can all use this wonderful dryeyetalk forum to share our difficulties and information. I wish more people would be so brave as you to do this. I hope you feel your international friends are with you, wishing you better comfort.

I drop into desperation.I had been waiting for two weeks for a reply.And after I sent my medical record,I have got no reply any more.I wait three weeks in vain.I have been standing in a train for tow nights to Beijing just for the medical record which they need for"confirm my candidacy".If they don't hope Chinese patients to go to USA,I can try to go to India.They can tell me straight out.If they can't confirm my candidacy,they can send me a email of rejection.But there is nothing at all.I can not understand.
Thanks BFS,for making me more misery.

[Rebecca Petris]

Zhang,

I contacted BFS about this and they said "We have received two patients from China, one who is being submitted to medical review on Thursday and another who has been told would need to see a corneal specialist." I am not sure which of those might be you but I would suggest waiting till the beginning of next week and then contacting them again to ask if there is an update. Sometimes things take a bit of time.

[Zhang]

It's very kind of you,tkank you.I received a reply today.
And I have also got a response from a FBS's India partner.It's easier for me to go to India.I think I can get sclerals ,wether I can or can't go to Boston.However,Boston is my first choice.
All these give me relief,thank you again,please wish me luck.

[littlemermaid]

Wish you very good luck and the best medical attention. It would be so nice to hear how you are ~ may help other people with their ophthalmology journey.

[Rebecca Petris]

I wish you the very best Zhang!

[Zhang]

Than you very much.I feel a little better,however,Meibomian glands stay the same.BFS recommend me be evaluated by a corneal specialist in China. But I don't think they can help me,so I am thinking about going to India.

[Zhang]

I have got lens at Japan.They are unable to solve all the problems of mine,but help me a lot any way.I glad I have got the lens.They suit me very vell,I can not feel the lens when I wearing them.
I had to prepare $30.000 for the trip and treatment.It's an impossibility for myself,but I got the money from my mom and many friends,I owe a lot to them.I also got help from you,I appreciated it!
I am looking forward to new jop and new life in the new year.
And,happy new year!

[Rebecca Petris]

Zhang, thank you so much for coming back and telling us what happened. It is great that you were able to do this (I'm sorry it had to cost so much!!!) No solution is perfect but I'm glad that they help you enough to have been worth it and especially that you're not feeling the lenses. Best wishes to you in the new year!