480-270-2652
Our mission is to support sufferers of meningitis and their families through support groups, advocate for advanced research for the prevention and the long term effects of various meningitis strains as well as facilitating programs to educate the public

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MFA National Headquarters

P. O. Box 1818
El Mirage,  AZ  85335
480-270-2652

 

 

Connect with our Board of Directors:

 

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Caroline L. Petrie
National Secretary
Caroline.petrie@musa.org

 

 

 

For web inquiries contact our web coordinator caroline.petrie@musa.org

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Showing 25 reactions

commented 2014-08-31 09:31:25 -0700
Buenos días, soy un sobreviviente de una meningitis bacterial, monocytogenes listeria, gracias a Dios sin ninguna secuela y estoy buscando una ong o fundación que se pueda interesar en mi testimonio de esta terrible enfermedad que no solo es afectada por uno, si no hasta por la gente que esta cerca de uno. Gracias.
commented 2014-08-12 18:44:10 -0700
Hi, I am a two-time, bacterial meningitis survivor. The first time, I was about 24 hrs from death! I was in the hospital for about a month. The second time I was more aware of the symptoms.

Now, my dilemma is the after affects! I feel like I am talking to the air, when I am describing my symptoms to doctor’s!

I have headaches pretty much daily. Or, head pressure. They msy not ladt all day long and the severity differs. I have major balance issues, short-term memory loss and/or lapses, extremely fatigued at times, mood swings,

loss of concentration, unable to express myself, (I can’t think of the words I’m trying to say). Loss of hearing, rt ear.

I think I am forgetting a few things I wanted to say.

I was 44 yrs old, the first bout and 49 yrs old the second time.

I don’t know who to talk to around where I live! I feel doctor’s around here do not have a clue about the after effects from bacterial meningitis and the magnitude it plays on me, physically and emotionally.

Can you please help me and hopefully steer me in the right direction?

Thank you so much for your time and patience!
Very Fondly,
Mary Jo McAllister
commented 2014-08-08 07:27:41 -0700
Good morning. My name is Chris Wagner. 18 years ago I contracted Viral Menigitis and have always felt my whole being changed after being sick. Now after all the years I see there is a distinct possibility that the virus affected me more than originally thought.


The virus started in Oct/November 18 years ago with a simple sinus/allergy headache which with each day grew in pain. The doses of tylenol, advil, aleeve grew from every 4 hours to about every 30 minutes. The day I finally gave in to go to the hospital was after winning a zoning hearing board meeting for a client and taking about 8 aleeve. The first night I was dropped off to the emergency room who classified it as a virus and gave me demoral – discharged me and threw up in the lobby and all night. Did not sleep that night and when my wife woke up the next morning I stated if we do not leave now I think I will die. Went into the same hospital and a doctor asked what she could do and I stated turn all lights off, all noise and help my back. She immediately placed me in ICU and ordered a spinal tap – which actually helped the pain. A week later left the hospital and went back to work.


Years later I started to notice my personality changed, memory issues and depression set in. Since then have lost my marriage, numerous jobs, etc. Now after stating this over and over but no once listened, now I find the feelings had are possibly true.


I currently live in Orlando, FL and want to find help. Do you know of any doctors in the Orlando area conducting help/research for damage after Viral menigitis.


Thank You for your time


Chris Wagner
commented 2014-08-04 23:05:34 -0700
hola,soy un sobreviviente de una meningitis bacterial, menignococo listeria y sin ninguna secuela que anda en busca de una ong o fundacion para expresar mi experiencia de esta terrible enfermedad a quienes le interese.
followed this page 2014-08-04 22:27:57 -0700
commented 2014-07-27 20:28:28 -0700
Need some information regarding Meningitis. My 13yo cousin has purple splotches and his Pediatrician stated it was Meningitis and sent he and his parents to the emergency room. It showed up in labs at the Pediatrician and the ER stated no. They discharged him to home prior to blood cultures to make sure it was not Meningitis contagious. He has a 102.9 fever during the day and it spiked this evening. He also stated his eyes were bothering him. I realize you cannot give medical advice but, I hope you will be able to provide me some information for his parents as they are very concerned.


Could you call me as I do not have access to email at all times thank you in advance.


4803803232
commented 2014-07-14 16:01:20 -0700
is menactra only vaccine, how do you take it safely to avoid severe side effects and what happens if severe happens?
commented 2014-07-09 19:40:38 -0700
I found your website when I was doing a search on meningitis. I am a survivor of meningitis and I was searching to see if anyone did a story on me since at the time, there were students that were interning at the hospital that I was in. One of them was interested in my case and was questioning me. I was trying to see if I could find that student to show them that I survived. I am an interesting case because I got a rare form of meningitis, I had Pasteurella multocida from a dog bite. I am a veterinarian and had I not insisted that I contracted it from the dog bite, I would have been dead. I posted my story to the webpage under survivors but I think I might have posted it to the wrong area since I don’t see it unless I look under reactions. Please share my story if you think it will help the cause. More doctors need to know that there are more than the classic ways to contract meningitis and that they really need to listen to their patients if their patients can still communicate with them. Thank God in my case, the specialist listened. He and I still communicate since I am a veterinarian in the same town that he has an office. He has helped me with some cases regarding the animals that I work with since he is a specialist in infectious and zoonotic diseases.
commented 2014-07-06 11:49:21 -0700
Already sent a messg…but here we go again. I was trying to sign up thru my email address, shown below. It keeps going back to the register now screen. This is very important to me. Please respond to me by email. dobelman@att.net.
commented 2014-06-28 14:15:20 -0700
can you get gbs or severe side effects from menactra? how do you reduce this?
commented 2014-06-23 23:09:06 -0700
My son Blake Burtram is a bacterial meningitis survivor.. He is experiencing several after effects from this disease. I was seeing what resources and/or scholarships are availe to our family.

Thanks,

Angie Burtram

aburtram@jefcoed.com

205-613-6052
commented 2014-05-22 04:22:31 -0700
My childhood best friend had Listeria Meningitis in July 2012. As a result, he now suffers daily from hydrocephalus and arachnoiditis. He walks with a cane; his speech is slow and slurred. He has headaches and double vision issues as well as ringing in his ears and feeling like his feet are freezing although they are warm to the touch. I realize that his case may be unique because not many 38 year old men would even have survived this. He is on and will remain on numerous medications for the rest of his life. My question is; is there alternative treatment, such as The Zone Diet, acupuncture, or holistic healing that can help alleviate some of his pain or heal him from within? Also, are there any experts who may have worked with a Listeria Meningitis survivor? You would think that with such a rare case that a doctor would want to study and work with my friend. He is a miracle. Thank you for your consideration and possible response.
commented 2014-05-16 12:37:52 -0700
Hello, my nephew had meningitis 1 1/2 years ago and is still suffering dibilitating effects. He is 27 and has been unable to work since he was in the hospital. He has seen numerous “experts” who have all thrown their hands up and each have told him to have a psych evaluation (which he has done). He has gone from living a full life acting in Hollywood to now living with his mom and using a walker or wheelchair just to get around. Any assistance you could offer would be greatly appreciated.
followed this page 2014-05-14 23:43:09 -0700
commented 2014-05-14 23:41:39 -0700
dear sir/ maam,

Good day, I am Rhea Lopez Sarona, im from ESCALANTE CITY, NEGROS OCCIDENTAL PHILIPPINES. I am the eldest among the 3 children of Danilo and Pamela Lopez. Sir/Maam, my youngest sister is now bedridden for 1 year. Last June 2013 she was found comatose inside her boarding house. She was rushed to the hospital and declared comatose, she was admitted for 65 days and the final diagnosis of her illness is SUPPURATIVE BACTERIAL MENINGITIS.our family is very much affected seeing her paralyzed. I as the eldest sister find it very difficult to find resources that can help the monthly medication of my sister. at present she is having a 3 times a week physical therapy session. Her attending physicians find it very rare that she survives and still alive. Our family believes that our Lord really do miracles in the life of my sister. Family resources is very much exhausted and we really have a difficult situation that can sustain he medicine she needs every month. Maam/Sir, Is this foundation extend financial help to my sister?

God bless.


Respectfully yours,


RHEA L. SARONA
commented 2014-04-22 08:33:16 -0700
Also, like Carol Liles, I would like to post a picture of my son, Benjamin, who succumbed to meningococcal septicemia within a half horrible day. His story will follow when I am up to writing it. Thank you.
commented 2014-04-22 08:28:13 -0700
I have been u able to amend my profile with my city and state. Will you please add New Milford , CT to it? Thank you.
commented 2014-04-15 05:23:34 -0700
Im planning to host a 5k to raise money and awareness for the MFA. Any promotional material or any volunteers, or whatever you can do to help me please let me know. Im located in OCala FL and my 3 year had Bacterial Meningitis and survived at the age of 2 months. God has placed this on my heart and Im motivated do to something.
followed this page 2014-04-14 06:26:56 -0700
commented 2014-03-08 04:57:01 -0700
my son Phillip Hoag is among the memorial stories. I’d like to know how I can get a photo of him added to his story?
commented 2014-03-05 20:32:26 -0700
My mom Age 45 suffered from typhoid h titre 320 ,o titre 320 she is admitted in hospital antibiotics given by doctors she is in satble condition for 12day then again her condition got poor and admitted to hospital. doctor says her typhoid cause brain swelling or meningitis can u please suggest me some treatment
commented 2014-03-01 15:11:31 -0700
is meningitis vaccine safe, menactra, serious side effects, can it be caught at bar?
commented 2014-02-24 23:11:07 -0700
Hello: my name is Maria soroa I’m doing a research for school for my health safety and nutrition class the reason i choose this health condition is my daughter has been submitted to the spiral test for the second time one when she was 3 months and one just a month ago now that I have the opportunity to learn more about this health condition in my class and would like to learn more about meningitis Could you possibly send me a brochure about meningitis disease ?
commented 2014-01-25 17:59:39 -0700
hello- My name is Brenda,I’m 47 years old and in October 2012 I was diagnosed with fungal meningitis from receiving a tainted steroid shot. I was hospitalized for 2 weeks and given amphotericin B in addition to a whole slue of other meds. Once I was stabilized I was put on Voriconazole and remained on it until October 2013. The medication had horrible side effects such as causing severe photosensitivity and short term memory loss but it also had a few positive ones as well. I noticed that the small things no longer made me anxious and/or irritated. During my last visit to the fungal clinic, I made mention of the fact that even though I was off the medication I still was experiencing memory issues and I began experiencing mood swings. So much so that I’ve thought about suicide; something I haven’t done since I was 16 years old. When I mentioned this to my regular doctor, I got the response that I must be starting menopause and he doubled my anti depressant , Zoloft. I found that response insulting. I felt like i was being dismissed. I know what I’m feeling is not related to menopause but I don’t know where to go for help. That’s why I’m writing to you and asking for your help. I’m more than willing to go through any tests deemed necessary and if at the end of that my problems can’t be explained, then I can accept the fact that I’m simply getting older. I managed to survive the meningitis but there’s been times I didn’t think I would survive the depression I’ve been experiencing. I am hoping you can help point me a direction that will help and I look forward to hearing you.
published this page in About MFA 2014-01-14 17:28:47 -0700