Ocular Histoplasmosis Community Group
A support board for people living with ocular histoplasmosis.
Hello.
I'm a brand new member here. Up until yesterday morning, I had never heard of Ocular Histoplasmosis.
I'm 40 years old. I have had corrective lenses since I was 10. So, I've been getting an annual eye exam for 30 years. Yesterday I had my routine annual exam. While the optometrist was looking in my eyes, he started asking me questions that I deemed to be bizarre...was I raised on a farm...around chickens as a child?
Then he proceeded to tell me that he was seeing scarring and I'd had histoplasmosis as child and it was dormant in my eyes for years. He dilated my eyes and took baseline pictures and told me he'd have me come back in 6 months to get more extensive pictures and scans and see if anything had progressed. I tried to ask questions, but he kept trying to rush me out so that he could bring the next patient in. All he told me was that if I have bleeding or leaking blood vessels the treatment would be laser surgery or injections and that I shouldn't freak out because there isn't anything I can do to prevent this.
So, I left the office and started searching the web. After reading everything I can, I'm really depressed. I haven't experienced any symptoms or vision loss yet, but I feel like from everything I read it's inevitable.
Is there anyone out there with any positive experiences to share? Does everyone who has Ocular Histoplasmosis end up with vision loss? I feel so sad thinking I may not be able to see or drive. Does everyone with this end up legally blind?
Despite the optometrist telling me not to...I am freaking out!
Amm
I'm a brand new member here. Up until yesterday morning, I had never heard of Ocular Histoplasmosis.
I'm 40 years old. I have had corrective lenses since I was 10. So, I've been getting an annual eye exam for 30 years. Yesterday I had my routine annual exam. While the optometrist was looking in my eyes, he started asking me questions that I deemed to be bizarre...was I raised on a farm...around chickens as a child?
Then he proceeded to tell me that he was seeing scarring and I'd had histoplasmosis as child and it was dormant in my eyes for years. He dilated my eyes and took baseline pictures and told me he'd have me come back in 6 months to get more extensive pictures and scans and see if anything had progressed. I tried to ask questions, but he kept trying to rush me out so that he could bring the next patient in. All he told me was that if I have bleeding or leaking blood vessels the treatment would be laser surgery or injections and that I shouldn't freak out because there isn't anything I can do to prevent this.
So, I left the office and started searching the web. After reading everything I can, I'm really depressed. I haven't experienced any symptoms or vision loss yet, but I feel like from everything I read it's inevitable.
Is there anyone out there with any positive experiences to share? Does everyone who has Ocular Histoplasmosis end up with vision loss? I feel so sad thinking I may not be able to see or drive. Does everyone with this end up legally blind?
Despite the optometrist telling me not to...I am freaking out!
Amm
I grew up on a farm in Missouri. We had chickens. Those damn chickens!!!
I left home at 18 and didn't notice a problem until I was 35. I noticed a blurry spot near the middle of my left eye coming on and went in for a checkup. They found two other smaller scars around the sides of my eye that wouldn't affect my vision along with the one that prompted me to come in.
It's been two years now and I've had 5 shots to keep the flare-ups in check. The shots work for me very well. When it is kept in check my vision is better than 20/10 and at most I notice a small spot where the scar is if I focus on it.
I think it's a really good thing your doctor noticed this prior to you experiencing any blurry spots from bleeding or leaking. It's the bleeding that distorts your vision and who knows, it may never happen to you. IF it does go in ASAP and get on top of things. Some people wait and lose their vision. Not cool. From what I've read getting the shot has taken over for the laser procedure as it causes scarring.
it doesn't sound fun having a needle go into your eyeball but it works and is better than losing your vision.
Look up what an Amsler Grid is. Print out a free one online and check it every now and then, looking for blurry spots or distortion. You got in early, that's what's so important. I wouldn't freak out if I were you but you're allowed to a little ;)
Jeff