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  • About Photophobia
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    What's New in Photophobia
    Community Voices

    What kind of eye masks have you tried?

    <p>What kind of eye masks have you tried?</p>
    8 people are talking about this
    Community Voices

    Seven hours on a stretcher in an ambulance - viral meningitis

    <p>Seven hours on a stretcher in an ambulance - viral <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9b00553f33fe9977b8" data-name="meningitis" title="meningitis" target="_blank">meningitis</a></p>
    1 person is talking about this
    Community Voices

    Anyone who has gone off disability but still have chronic illness?

    I don't know how to make life work living on disability--especially after I lose my mom's insurance. I looked at the figures for social security and I can only make $1260 gross income before losing my disability status, most of which would remove my SSI payment. I'm good at a lot of things, but haven't worked before, I wasn't able to finish more than a year of college, can't do demanding physical labor (no 40lbs for me), and can't be stuck all day in one position. I don't know if I'm looking for solutions, just looking for people and guidance on how to navigate trying to find work after being disabled. #Depression #Anxiety #Disability #EhlersDanlosSyndrome #Photophobia

    7 people are talking about this
    Community Voices

    Ocular Manifestations of EDS

    I have to get glasses for the first time today. Doing last minute research because the severity of my poor vision changes

    I came across this at the link included. There us also a kindle unlimited book (by I think the same author. If you have KU you can borrow it, if not it is 2.99
    Ig coveres these issues in more depth

    How do I know glasses will help / prescription will stay the same if blurriness levels change?

    Common symptoms
    Doctors and EDS patients must not assume that their symptoms are always due to their EDS and are therefore unactionable. For example, even among the EDS population, the number one cause of fluctuating vision is diabetes.

    Blurred vision that comes and goes;
    difficulty in accommodation
    • Diplopia (double vision) out of one eye, or with both eyes open
    • A change in depth perception, especially when looking to the side that may be intermittent
    • “Photophobia” (light sensitivity) • Complete, or almost complete, loss of vision in one eye that lasts a few minutes; migraine auras, scintillating scotomas
    • Visual “snow”
    • Dry eyes
    • Tunnel vision
    •Floaters (EDS patients have more floaters than the general population)
    • Flashes of light or a curtain over the vision •
    *Vision that is not fully correctable with glasses or soft contact lenses. (Doctors should perform corneal topography on all patients with unexplained blurred vision.)
    • Myopia (nearsightedness) that increases quickly •
    • Deep eye pain that seems to have no ocular cause (it may be due to venous pressure on the branches of the trigeminal nerve -- the fifth cranial nerve in the cavernous sinus – and can thus exhibit intermittently).


    High Myopia
    In Ehlers Danlos Syndrome, however, the corneas are often found to be fairly flat, meaning that the near-sightedness is due primarily to elongation of the eye.6
    Early symptoms of keratoconus include vision that just doesn’t seem as clear to the patient as it should be – even with use of new glasses or soft contact lenses. It is usually worse in one eye than the other.
    Diagnosis of
    Lens Subluxation
    Angiod Streaks
    Dry Eyes
    Macular Degeneration
    Posterior Staphyloma
    Carotid-Cavernous Sinus Fistulas

    9 people are talking about this
    Community Voices

    How in the world do I work?

    Hi, I have Hypermobile Ehlers Danlos Syndrome and some of the health problems it has caused is photophobia, severe eye strain, and numerous hand problems and pain. I was unfortunately disabled before I could work, and in USA, that means I only can get Supplemental Security Income (SSI), instead of the Social Security Disability Income (SSDI).

    SSI is a needs based program and only pays out the maximum of $736/month if you are homeless or paying an "equal share" of rent, otherwise the maximum you get is $514. I am getting $514 because I am at my mother's and even $736 is barely enough to rent a room where I am (Washington State).

    SSDI requires work credits to get on (1 credit = $1,410 of net income and only 2 credits can be earned in a year) and I have found that I have to work at least five years before I qualify.

    I have no idea how to do this with my vast collection of symptoms from my illnesses. Menial labor is out, due to joint problems and fatigue. Computer work is very difficult with my eye and hand problems. Because of the unpredictability of my illness, I would not be able to adhere to any kind of work schedule another person sets for me. The photophobia prevents me from working under fluorescent lighting. I then determined I would be limited to a multifaceted home business that would allow me to rotate activities to compensate for the limited time I am able to do anything before I am in too much pain.

    Furthermore, my living situation is bad and my mother is a hoarder--i do not even have my own room and what space I have is pretty much full. I'm on housing lists, but the waits are years long, up to a decade. If I move to a place where you can live on $514 with a systems wide, incurable illness that many doctors do not understand, I will lose the network of doctors I have created over many years. Most places with that affordability also have a climate my body will fail in and do not have good healthcare. I am very stuck.

    What do those of you with photophobia and/or EDS do for work?
    #Photophobia #EhlersDanlosSyndrome

    4 people are talking about this
    Community Voices

    head shaken up

    #concussions . it brought on a sensory disorder and #Photophobia. special tinted glasses from here on out! :)

    Community Voices

    Which glasses are perfect for photphobia light sensitivity in indoors and outdoors..andwhich colour is best

    Community Voices
    Community Voices

    How to survive sunlight with a Vampire's hypersensitivity to light?  #Photophobia  #hypersensitivity

    I have extreme sensitivity in the sunlight since childhood. I feel like totally melting exhaustion, nausea, going in a very negative depressed mood generally really sick when exposed. At home I have always closed grey curtains and low to mid-intensity artificial light or no light. I also experience misophonia. this might be because of Aspergers or ADHD. I have no other diagnosis of the eyes or nervous system. Anyone experiencing this? How do you deal with it? Normally it is rarely sunny here but this summer was real suffering for me.. #Photophobia #Autism #ADHD  #AspergersSyndrome #sunlight

    4 people are talking about this
    Community Voices

    Photography tips with photophobia?

    I am a full time internet reseller.
    It’s hard and I’ve had some complaints. With #chronicmigraine and #Photophobia in the way, I live in dim lighting with the brightness turned down on all my devices. I can’t be the only one trying to improve photography skills with #lightsensitivity . Please give me some tips.📸