Stevens Johnson Syndrome

[grandsporta]

Here is my story...

In 2003 I was in the Army, during basic training (at the very end :sadface I got conjunctivitis in BOTH eyes. At first it was just pink eye so they gave me gentamyacin (sp) and motrin for the fever. Two days later, it started. I started getting red bumps all over my body, my eyes were getting worse so I had to go back to the hospital. The eye dr there said it was SJS and admitted me to emergency right then and there. About an hour later, they told me they could not do anything so they had to ship me from Ft Jackson to Ft Gordon in Georgia, I was there for 2 days until my skin started to fall off. I was air evacuated from Ft Gordon Georgia to Ft Sam Houston in San Antonio and was in ICU for a month. It has now been 6 years and still dealing with eye issues. I have severe dry eyes in both eyes (right eye being worse) and they are always inflammed, and red. Eye lashes always grow in bad places so I am always having to pluck my eye lashes that scratch my eyes. They get infected quite a bit, and always having oily fluid that comes out of my eye. I know it sounds gross, I am very new to this forum, but I have seen several ophthomologist's and just don't know what to do to help myself so I am not always in pain, and can have clear vision with no scratching or red eye. Thanks for reading this, I look forward to hearing some ideas or advice. Thanks again!

side note: I apologize if I miss spelled some words, I am at work and trying to type this up real quick. Thanks!

-Joseph

[Gretchen]

Steve -

I am so sorry to hear your story. Have you heard of the Boston Foundation for Sight? They do custom scleral lenses and very often fit them for SJS patients. There are some folks on here who have scleral lenses and have had success (including Rebecca Petris, the founder and keeper of this forum). I remember a while back there was a your woman on here from New Zealand who had SJS and wore sclerals. I would do a search on this board for "Sclerals" and "SJS" and see what comes up. If I were you, I would pick up the phone and call Rebecca. She lists her number in the dry eye shoppe. She is wonderful and will return your calls. Pick her brain about sclerals. I know that they have helped many folks with SJS.

You also need a good dry eye doctor. Look in the "Plug a Doc" section to see if there is anyone local to you. I see that you list your location as Texas. I have met Dr Richard Yee of Houston on several occasions and he has impressed me with both his knowledge and his interest in dry eye. He is the inventor of autologous serum drops.

In the meantime, get yourself a good pair of moisture chamber glasses. They will give you relief until you come up with a better game plan. These are available in the Dry Eye Shoppe and there is much discussion on this board about them. Search under "Googles" "moisture chamber" "wiley" "panoptx".

I wish you the best of luck.
Regards,
Gretchen

[grandsporta]

Thank you for the great info! Fortunatly for me, when I got sick scaring plugged up my tear ducts anyways so I don't need to get them plugged, but I will try the other things you suggested and see. Thanks again!

Any more input would be great!

[odydnas]

Hi, I second Gretchen's advice: sclerals, moisture chambers, and autologous serum - things most ophthalamologist do not mention because they do not know how helpful these things can be. If you check out Boston Foundation for Sight's website: www.bostonsight.org - they mention SJS a couple times. Good luck!

[Rebecca Petris]

Joseph, welcome. Very sorry to hear what you're going through. I talk to SJS patients quite frequently and the outcomes certainly seem to vary a lot but for the most part, most of them that I know have gotten dry eye under acceptable control in one way or another.

As Gretchen mentioned, sclerals are usually a really good match for SJS (although they don't address all issues). You're in a really good location for getting them compared to most of us... Boston sclerals are being fitted at a satellite clinic at Baylor in Houston now, and my own former optometrist (Greg Gemoules in Coppell) who is the only other one in the country I'd trust with a specialty lens fitting like this is practically in your backyard.

If I can be of any help please give me a call! 1-877-693-7939.

[Blake]

First, I want to thank you Joseph for serving our country boldly.

Second, I wanted to say I have enjoyed reading this board for the past week. This is a great resource for those with dry eye and ocular surface diseases.

I would agree with the poster who mentioned autologous serum tears. In our most interesting cases (put in a gracious way), I have found they provide an excellent source of relief. Of course, they are not a cure-all, rather a nice additional therapy to those in the greatest discomfort.

Dr B

[grandsporta]

First, I want to thank you Joseph for serving our country boldly.

Second, I wanted to say I have enjoyed reading this board for the past week. This is a great resource for those with dry eye and ocular surface diseases.

I would agree with the poster who mentioned autologous serum tears. In our most interesting cases (put in a gracious way), I have found they provide an excellent source of relief. Of course, they are not a cure-all, rather a nice additional therapy to those in the greatest discomfort.

Dr B

Thank you very much for your responses! Are the screlals comfortable? What exactly do they help with eye sight and keeping my eyes moist? Thanks again everyone! I deal with this every day and it definitely effects my social life quite a bit and am getting pretty tired of it. I just want a somewhat normal life again!

[Rebecca Petris]

If sclerals are well designed and fit you properly they can be perfectly comfortable. I wear mine about 16 hrs/day and most of the time I don't think about them at all. They vault the cornea and keep the entire cornea bathed in a fluid reservoir. The limitation which can affect people with SJS and other kinds of severe dry eye is that while they're lubricating the corneal surface, the lid-lens interface can still pose some problems. I think many, maybe even most of us with dry eye who have sclerals still need things like Panoptx/Wiley style eyewear in challenging environments, outdoors in the wind, etc.

Visually, what they do is like most RGPs, they compensate for cornea irregularities (of the sort not corrected with glasses/soft contacts... whether on the surface or in the stroma) by providing a sort of artificially smooth optical surface in front of the cornea.

[grandsporta]

If sclerals are well designed and fit you properly they can be perfectly comfortable. I wear mine about 16 hrs/day and most of the time I don't think about them at all. They vault the cornea and keep the entire cornea bathed in a fluid reservoir. The limitation which can affect people with SJS and other kinds of severe dry eye is that while they're lubricating the corneal surface, the lid-lens interface can still pose some problems. I think many, maybe even most of us with dry eye who have sclerals still need things like Panoptx/Wiley style eyewear in challenging environments, outdoors in the wind, etc.

Visually, what they do is like most RGPs, they compensate for cornea irregularities (of the sort not corrected with glasses/soft contacts... whether on the surface or in the stroma) by providing a sort of artificially smooth optical surface in front of the cornea.

Do you have to take them out frequently throughout the day? Do the lens' reduce a lot of redeye that dry eye causes? I am very interested in learning about these. Thanks!

[Rebecca Petris]

Normally I never take mine out during the day. I don't have any major red eye issues so I can't answer that one. Redness causes and persistence varies a lot.

[grandsporta]

Normally I never take mine out during the day. I don't have any major red eye issues so I can't answer that one. Redness causes and persistence varies a lot.

And where I can find autologous serum eye drops? Thanks again for all your help! I think this is a good start.

[Rebecca Petris]

Serum drops are prepared from your blood. You would need to start by finding a doctor who is experienced with this and who has a lab they already work with. I don't keep track of who's doing it but here's where I would start looking:
- Search this board. There is a topical forum archive (scan the forum titles and you'll see it) where the posts about serum are filed. Many patients post about which doctor they are working with as this is a relatively 'scarce' resource.
- If you don't get any leads there, look up the corneal specialists at UTSW.
- Perhaps try contacting Dr. Gemoules, he may know which ophthalmologists, if any, in the DFW area do this.

[Blake]

Rebecca,

Your PM box is full. I would like to send you a private message.

Thanks,

Dr. Blake Hughes

[Rebecca Petris]

Sorry. I've cleared some space. You can also reach me by email if it's full.