Anyone know of Meningitis/Encephalitis help in the US?

Hi all- Diagnosed with viral meningoencephalitis two months ago. The daily battle, charging ahead as best I can though recovering! I have found most meningitis or encephalitis help or associations or specialists are all in the UK or Australia (YAY my original home!!) or India. Does anyone know of big US support? I want to help get some handouts together to help those with meningitis or encephalitis know what to do once they get sick. I've stumbled my way along- endlessly researching (since I forget most of what I read still) I want to save others the pain and stress to find help they need while they recover. As far as 1. Disability info and what is needed 2. Doctors/specialists/tests and how to get them, what they do, why they are good 3.Medical leave information with work and how to properly go about handling leave to keep your job/health insurance 4.Food stamps/Medical bill assistance/ Rent assistance to help while unable to work.

Let me know any thoughts as I get this idea brewing- I'm still going through my recovery so this will be a long term project for now :) CHEERS!

3 Replies

  • Shae...

    Not really sure how much help this is, but here goes...

    1) Specialists have been hard to find in the Atlanta area. My wife have bacterial meningitis diagnosed last month and we've not had a specialist yet who's specialty is "meningitis." There are various pain management clinics around, but that's primarily for the folks with chronic back pain, etc. who need meds that their doctor doesn't want to write any longer. Headache clinics are more appropriate. It's gonna take looking online at doctor's websites, and when you find something that looks appropriate, calling them.

    Another avenue may be the local health department or the CDC. Ask who can help treat in your area.

    2 )For disability, get an attorney! My wife is going through right now, but started "A LONG TIME AGO," prior to the meningitis. Medical records, doctor's notes and treatments, prognosis, etc. will be needed.

    3) For medical leave info, I'm sorry, but I've not ideas for that or how to address it.

    4) For the government assistance programs, TO MY KNOWLEDGE (disclaimer!) I believe they are income based. Go to the local health department (what we have to do in Georgia) and meet with a counselor in a one-on-one, face to face meeting. Tell them what's going on, what you need, and go from there. Local churches may have or have leads on food banks for you. Call the United Way...they have great leads for resources, too.

    I hope some of this helps! I'm not an expert, just a patient's spouse trying to help another patient.

    Best of luck and remember, time is really the key here.


  • Hello and sorry for your troubles. This website is the best source I know. I am in Oklahoma also happen to be a disability attorney.

    For disability the problem is you have to have a condition that is expected to last for more than a year.

    For many on this website that wont be a problem however for others their recovery will be such that an administrative law judge will conclude there is other work they can do evem if it not what they have always done.

    I dont think that meningitis meets a disability listing such that it automatically qualifies you for diaability.

  • There is a worldwide organisation called the Confederation of Meningitis Organisations (COMO). Under “find a member” there are a number of groups listed in the US. I am not sure they can help you with all your questions, but may be a good starting point.

    You will find the list here:

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