Presumed Ocular Histoplasmosis (POHS)

Are you living with the effects of Presumed Ocular Histoplasmosis (POHS)? Are you seeking information? Are you looking to connect with others who have POHS? You’ve come to the right place. I want to share information with others, who like me, has an eye disease called Presumed Ocular Histoplasmosis (POHS). I would especially like to help those who are newly diagnosed.

It is my wish that my website will benefit those living with POHS. I welcome your comments, suggestions and your stories, and if you would like me to add some links for Presumed Ocular Histoplasmosis, please let me know.

There are a number of links below that will take you to outside organizations for further information on Presumed Ocular Histoplasmosis. Click here to go to links

Thank you for visiting my web site.

What is Histoplasmosis?

Photo of a normal retina
Photo above –  normal retina
Photo of a retina affected by Histoplasmosis
Photo above – retina affected by Histoplasmosis

2 Photos above courtesy of ©Dr. Joshua Young
New York University, Department of Ophthalmology – Digital Journal of Ophthalmology

pohs-jhendrix
Photo above – my retina affected by Histoplasmosis

Photo above courtesy of ©Dr. Stanley Polack 2001

Presumed Ocular Histoplasmosis is a fungal infection caused by inhaled spores of Histoplasma capsulatum. It is most commonly found in mid-western parts of the United States, like the Ohio Valley, however, it is not limited to those parts. The Histoplasma spores are found in soils, especially those enriched with bird or bat droppings, but can be found any place that birds or bats live (barns, chicken coups, caves, etc.). The organism is inhaled in the lungs, travels in the blood, and then settles in a nutrient-rich area of the body – in our case the retina.

I was doing some further research and came upon a partial list of occupations that are at a higher risk for exposure to Histoplasma spores.  Please note: this list is from the US but it will likely apply here in Canada as well.

The list can be found on the US Centers for Disease Control and Prevention website and the following is quoted from page 4 in a .pdf document (this publication supersedes a full article on this page http://www.cdc.gov/niosh/docs/97-146/default.html).

Appropriate exposure precautions should be taken
by these people and others whenever contaminated
soil, bat droppings, or bird manure is disturbed.

➧ Bridge inspector or painter(55,63,72,86)
➧ Chimney cleaner(66)
➧ Construction worker(12,57,58,67,85,90)
➧ Demolition worker(7,57,73)
➧ Farmer(7,12,74–77,86)
➧ Gardener(7,78,91)
➧ Heating and air-conditioning system installer or
service person(8,61)
➧ Microbiology laboratory worker(23,53,64,86)
➧ Pest control worker
➧ Restorer of historic or abandoned buildings(61,64)
➧ Roofer(52)
➧ Spelunker (cave explorer)(56,59,60,68–71)

If someone who engages in these activities develops
flu-like symptoms days or even weeks after disturbing­
material that might be contaminated with
H. capsulatum, and the illness worsens rather than
subsides after a few days, medical care should be
sought and the health care provider informed about
the exposure.

http://www.cdc.gov/niosh/docs/2005-109/pdfs/2005-109.pdf

Help is available…

Education is key – gather all the information you can about POHS because it’s not going to go away. There are numerous institutes online that offer excellent articles explaining POHS. I have included some links below to get you started.

You are in control – knowing all you can about POHS will allow you to be in the driver’s seat. The condition is permanent so let’s do what we can to make the best of it. Don’t let it get the best of you!

Join a support group – find other people in your community or online to talk to. Most are more than happy to lend a helping hand. Search for a local group  in your area, or get on the web and find a forum where you can share your feelings and ask questions. I’ve included a Facebook link below which offers excellent support to suffers.

Ask your ophthalmologist! They can’t give you names of people in your area who have POHS but they may know of someone you can connect with group-wise.

Good luck to you in your search for information and with the management of this disorder. Be positive, be strong. Reach out to others who can lend a hand, a voice, a shoulder. You are not alone.

Please feel free to write me. I have received many letters over the years from people all across North America and some from afar. From people like you and me who just wanted to talk to someone and share their stories, thoughts, concerns and hopes.

I am hoping that one day they will find a way to restore our vision; if not totally, then partially. I understand that much is being done in this area and some have already been fortunate enough to regain some of their vision. If you live in the United States then you are well ahead of us here in Canada when it comes to research but we are still hoping for par one day.

Good luck my friends and all the best coming your way…

POHS Links

Presumed Ocular Histoplasmosis Links

Removal of a Subretinal Neovascular Membrane in an eye with Ocular Histoplasmosis – Warning: not for the squeamish

Canadian Centre for Occupational Health & Safety – OSH Answers: Histoplasmosis – What is Histoplasmosis and what causes it?

Canadian Uveitis Society – Presumed Ocular Histoplasmosis Syndrome (POHS) – A brief description

Bennett & Bloom Eye Centers – The Specialists in Lasik and Laser Surgery – What You Should Know About Ocular Histoplasmosis

National Eye Institute: Patient Information – Facts about Histoplasmosis

Centers for Disease Control and Prevention (CDC) – General Information – Histoplasmosis

American Family Physician – Overview of Histoplasmosis

Presumed Ocular Histoplasmosis Syndrome – a little more medical terminology than you may be used to or understand – by eMedicine by WebMD.

Avastin Eye Injection is a Treatment for Macular Degeneration and Other Eye Diseases – Avastin side effects and complications

Amsler Grid Eye Test – This is a good one as it has the optic nerve area highlighted.

What is your story?

Please feel free to share your comments in the comment section below, and/or share your story of POHS on my “My Story of Presumed Ocular Histoplasmosis” page, via the link here or below, or under the Presumed Ocular Histoplasmosis POHS menu at the top of the page (drop down menu). I would love to hear from you.

Thank you for visiting!

My Story of Presumed Ocular Histoplasmosis

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14 thoughts on “Presumed Ocular Histoplasmosis (POHS)

  1. Lizzie

    I enjoyed the blog, thanks for the information 🙂 I’m a super obscure one…got diagnosed with POHS but I live in the UK, only really ever travelled in Europe! Felt like I was in an episode of house when I started getting asked if I’d ever been to the mississippi/usa/india/etc.

    1. Hi Lizzie! Thanks for stopping by. Sorry to hear you have POHS. We are a strange lot aren’t we? Having a rare disease is not something one ever expects. I understand the “House” thing :p There is a lot more information today than there was when I was diagnosed but it doesn’t make having it any easier. I would love to find the stats one day and plot a map. Until then, feel free to stop in anytime! You are always welcome. And do take care. Thanks again 🙂

  2. Torey Rohde

    No, they’re not painful in the slightest. It’s much more of a psychological hurdle. I don’t look, and it’s over in about 20 seconds. They give plenty of numbing drops and a numbing injection. I have an impressive bloody eye for a few days afterwards, but so far that’s the extent of the side effects. I will go back in a week and they will tell me if I’ll have another or if we’ll wait and see what happens. Yes, so far they’re working but the thing with the injections is it wears off. They never know for sure that it will stop causing problems when it wears off. I’m happy to say that when I first went in, there were wavy lines, peoples faces were distorted, and a blind spot had developed as well and since that day and getting my first shot there has been definite improvement. The blind spot is there but lesser, the wavy lines are there but not as noticeable. The scans show much improvement. It’s working when it’s been injected. Let’s hope it “chills out” and we can stop the injections.

    1. Oh Torey, I am glad to hear they are not painful. Just the thought for me is unpleasant. You are a trooper! Good for you. Having noticed a slight change is good news. I have heard others say the same.

      If I can offer any advice at all it would be to never second-guess yourself. If you feel something isn’t quite right do not wait. Just remember, time is important to saving your vision. You do not need more vision loss.

      Please keep in touch and let me know how it’s going. And you can always email me if you desire 🙂

      1. I visited with my doctor last week at the University. I have noticed some more wavy lines but they said my scans look better and not worse and perhaps I’m noticing some new inflammation that hasn’t shown up yet on scans. They suggested taking a short dose of steroids to treat the inflammation but I declined and he said it’s fine to wait and see. He thinks the chance of my losing vision is exceptionally low since we caught it early and even if things drop down again it can always be corrected, controlled with the injections. I have histo spots in my left eye but they’re not in my central vision. He’s confident that my vision won’t be greatly affected by all of this and that makes me feel better. Worst case scenario I go legally blind in my right eye but he thinks that can even be corrected with more injections if for some reason things get that far. Just wanted to update you! Haven’t had an injection since Feb. 8.

      2. Sorry to hear about more wavy lines. Keep on top of it for sure. We are pretty fine-tuned to changes so it’s good not to wait on getting it checked. You don’t want to ignore anything. So yes, hopefully things will settle down and you won’t need any further treatments. It is such great news to hear that the injections work without causing further vision loss as the laser does. I am crossing fingers for you. Thanks for checking in and feel free to do so in the future as well. Wishing you all the best 🙂

  3. Torey Rohde

    I read your story and found it to be heartening. Have you not had injections simply because the occasion hasn’t arrived since they have been used as a treatment? I have had 3 injections so far.

    1. Torey, I have not had injections, luckily! Canada is behind the US when I comes to medical treatments. I don’t know how long it took for Canada to start using the injections but I do know it was quite some time. I am happy that I have not had to have them. I am sorry to hear you have. Have they worked for you? They must be painful?

    1. Sorry, I understand, Torey. I was 21 when I was first diagnosed. My story is just above the comment section in a link or go to the top of the page and highlight the menu for Presumed Ocular Histoplasmosis. I added the page there. Please feel free to share your story too. Taking the time to educate yourself should help to alleviate some of your anxiety. Understand the issue. Take it easy.

  4. Torey Rohde

    I was just diagnosed last November and am searching for answers. I’d love to hear your story! Is there somewhere I can look? I know that each case is individual but I’d love any information I can get, which so far isn’t much and isn’t tremendously positive either.

    1. Hi Torey,

      Sorry to hear you have POHS. It’s not easy accepting that you are losing vision. Where do you live? I would like to know more about your story as well. I will post my story – have it somewhere amongst thousands of files 🙂 Thanks for stopping by. Take care and hope to hear from you soon.

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