Coping with Eye Herpes

I was diagnosed with HSV-1 Ocular Herpes last summer -- a complete shock.  I emerged from the first episode with some scarring on my cornea.  Luckily (if you think of it in a glass is half full sort of way), the scarring did not occur in the center of the cornea, so had a less severe effect on my sight but an effect none the less.  I'm am currently on the tail of another outbreak, which left even more scarring on my eye.  I can no longer drive comfortably at night, have trouble reading for longer periods of time (once my favorite pastime), and can't use the computer for long.  

While the other effects this has had on my life are inconvient, the fact that I can not use the computer for long has had a huge impact on my life since I am a professional graphic designer.  I had to drasticly reduce my schedule, and resort to freelancing versus a salary position because of my need for frequent breaks and the unpredictability of this disease which left me depressed.  

I have a lot of problems physically as well as emotionally dealing with this problem, and found very little support out there.  When searching the internet for Ocular Herpes Support groups, you have two options: a support group for those with the Herpes STD or a support group for those with CATS suffering from feline form of the disease.  What resources are there to help?  Are there forums, chatrooms, books, magazines, anything available so that I can connect with others also feeling the impact of this disease on their lives?  Feeling very alone here, anything would help.  Thanks.

[John C Hagan III, MD, FACS, FAAO]

HSV-1 IS NOT A SEXUALLY TRANSMITTED DIESEASE (its the same virus that causes fever blisters). HSV-2 is STD.;

See a cornea specialist. You might benefit from laser PK to remove the scars.

Find a cornea specialist at www.aao.org

JCH III MD

[MissDebD]

I'm aware HSV-1 is not sexually transmitted,  Hence my frustration with not having any support networks (You more readily see those for the Sexually Transmitted Herpes, where are is the support for people like me, was my point).  I am currently under great care and watch of the head of Opthalmology -- no issue there.  I understand the medical issues and side effects of this disease, my concern at this point is more for the mental issues.  This isn't just a simple case of "pink eye" like most people think (and as you know), it has had a ripple effect through my whole life slowly stripping away little things like a hobby I enjoy and the freedom to drive, and most devastating: my career.  Worst of all it's unpredictable and not widely known which is even scarier.  I'm not in need of a specialist (I have one) I'm in need of support, and was asking if you could point me in the right direction.  Thanks for you quick reply.  I hope I've made myself clearer this time.

[John C Hagan III, MD, FACS, FAAO]

There is almost every type of support group out there. You'll just have to dig. Expect that there will be more type II than type I because its more serious.

JCH IIIMD

[naoye]

I'm really sorry that you are having such serious difficulties in your life from the HSV-1 infection.  I don't have a lot of knowledge in this area, or know of any support groups unfortunately, but can tell you about my experience with this virus.  I had 3 or 4 recurrences in my right eye, the last one several years ago, that caused corneal scarring and warping.  I received good medical treatment.  However, I didn't realize the seriousness of this infection and didn't do any research into it.  You are wise to obtain the best medical advice and look for support as you are doing.

When the virus was active, I was told to avoid too much light exposure.  It was painful and debilitating.  But after healing, I was able to read and work on the computer as much as I wanted to, as long as I had proper corrective lenses (which I don't at the moment because of unrelated problems).  The scarring has also faded with the passage of time but the warping still prevents me from having sharp vision in that eye.  The best advice I got was just to maximize the vision in my good eye, while staying aware that the support of the affected eye is still very important.  I do rely more on my left eye but usually don’t even notice that it's doing more of the work.  

I can certainly identify with feeling very alone with this kind of problem.  With my other vision problems, people on this site have given me wonderful information and support.  I truly don't know what I would have done otherwise.  I hope you will find the support you are looking for and wish you a speedy recovery.

[John C Hagan III, MD, FACS, FAAO]

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