SJS, from Spain to Boston, it's worth a try?

[Rebecca Petris]

Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english

Very good advice from odydnas. Just a few additional comments:

Amongst the dry eye crowd, SJS, GVHD and cancer patients are generally the ones with the most to gain from scleral lenses. I've known a lot of people with SJS who wear them (mostly BSLs but also a few with other kinds of sclerals). Many times it works out perfectly, many times it's not perfect but gives them enough benefits that it's still worth it, and sometimes it doesn't work out at all due to other eye conditions or factors. The overall success rate for these patients is - I think - higher than for people with dry eye from other causes or less severity. On the other end of the spectrum I suspect the LASIK patients have the least predictable results for several reasons.

For questions about subsidy, you would need to contact Boston Foundation directly. I know that people from some countries receive government subsidies for the treatment but I don't know which countries.

During the visit your time is divided between lens fittings and trials, and training to care for, insert and remove the lenses. Most people spend most of the day at the clinic during the visit.

Benefits depend on what your condition is and whether the fitting is 100% successful. The lenses can restore vision in people with various corneal diseases; they protect the eye surface from suffering ulceration and scarring from extreme chronic dryness; and they can greatly relieve dryness symptoms and also light sensitivity.

[cristiandryeyes]

Muchas gracias!
Sabes si en algún lugar de su web hablan de ellas? no lo veo por ningún lado y lo necesitaría para llevárselo a mi médico.

What about the last two questions? Can anyone who tried them give me some input?

Te recomiendo que llames por teléfono y como dice el amigo de arriba, un médico normalillo no sabe de lentes escerales, lo único que hará es desalentarte.

Saludos

[odydnas]

Hi! I am not a scleral lens user, but from being on this site for so long, I've learned a few things.

1. Many doctors do not know about the potential benefits of scleral lenses for dry eyes, so the reason they havent suggested this treatment to you could simply be due to ignorance, not incompatibility. Dry Eye is a complicated subject that few doctors are interested in, so if you learn of a treatment on this website that no doctor has ever suggested to you, don't be afraid to find more information to bring to your doctors and ask them about it.

2. It can be very expensive, but they have told me that they do not turn anyone away due to their inability to pay. I don't know if Spain will help you out or not, but this would be a question I would contact Boston Foundation for Sight to ask them.

3. I have heard that while there, they will put trial lenses in your eyes to see if it helps you. If it does help, then they will spend time taking measurements and stuff and make you a customized pair and you will learn how to insert and remove them.

4. In terms of benefits, it can be very individual and I have heard some very mixed results. I have heard people say that sclerals did not help at all. But I have also heard people get miraculous results from sclerals and find complete comfort with them. And I have also heard a lot of results between these two extremes. It is hard to predict whether sclerals will do anything for you without actually trying them.

I believe I've read some people post that a guy named Ken Pullum in the UK (I could be wrong here) fits sclerals. Do a search for that. So that could be a cheaper option to try. But keep in mind, Boston Foundation for Sight focuses only on fitting sclerals and many of their patients have SJS, so they would have a lot of expertise in that area.

I hope that helped! And your English is fine!

[maxif875]

Muchas gracias!
Sabes si en algún lugar de su web hablan de ellas? no lo veo por ningún lado y lo necesitaría para llevárselo a mi médico.

What about the last two questions? Can anyone who tried them give me some input?

[cristiandryeyes]

Hi all.
I'm had a Stevens Johnson Syndrome long time ago hence i have obviously severe dry eyes. i had never heard anything about scleral lenses until now thanks to this web, and for that reason i'm not sure if i'm a fit for them, maybe nobody has told me nothing because i'm not.
Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english

Hola. Lo más parecido a BFS en España es el instituto IOBA de Valladolid, sé que hacen lentes escerales a medida, quizás deberías empezar por ahi Suerte y saludos desde Valencia.

[maxif875]

Hi all.
I'm had a Stevens Johnson Syndrome long time ago hence i have obviously severe dry eyes. i had never heard anything about scleral lenses until now thanks to this web, and for that reason i'm not sure if i'm a fit for them, maybe nobody has told me nothing because i'm not.
Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english