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Meningitis leaves lasting scars, readers say

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The story of one college student's fight against bacterial meningitis was familiar for many readers, who remember their own terrifying encounters with the disease. In response to that article, readers shared their experiences with the meningitis' destructive nature and its lingering effects.

Twelve years after Emily of Memphis, Tenn., contracted meningitis, the memory of the excruciating pain she felt that day has faded. But when strangers stare at her scarred legs and feet, where her doctors performed skin grafts, it still stings.

"I got so many looks — no, stares — from people, and I still do to this day," Emily writes. "I don't mind answering people's questions, but I do mind them gawking at my scars."

For Ronald of Woodinville, Wash., it's been three years since his son complained of something that felt like heat stroke after football practice. Now, he can't forget the 15-year-old's last words: "Dad, my head feels like it's exploding."

"I have never been so helpless as I watched my son die," Robert writes. "My heart aches for his touch, the sound of his voice and the sight of his smile. I still cry every day."

Keep reading for more responses.

My 22-month-old son died 13 years ago this month from this terrible disease. It never leaves me — the night we spent with him as he fought through that evening, only to lose the battle one week later.

— Thomas, Fenton, Mich.

One of my best friends is currently in the hospital. The other night while partying at his house he kept complaining of a horrible headache. The next day his roommates returned home and was having a conversation with him and suddenly he got a confused look on his face. They asked him if he was OK and then he fell out of his chair and onto his face and began to have a seizure. ... When he arrived at the hospital, they thought it was epilepsy, but it turned out to be meningitis. It has already spread to the left side of his brain. But the good news is that he woke up today and is even talking. I think he is going to be one of the lucky ones.

— Shiloh

My daughter became ill in the middle of the night with a headache in June of this year. By 6 p.m. the following day, she could hardly talk and was becoming more and more incoherent, not even knowing what year it was and seeing things. ... Her doctors told us not only did she have meningitis, but it was bacterial and it was in both her spinal fluid and her blood. By then she was not speaking or moving and she was wearing a diaper. ... We didn't know what to expect, and when everyone who touched her was gowned from head to toe and masked that was even scarier. My daughter spent 11 days in the hospital. ... She has since recovered and has no residual effects of the meningitis due to prompt response of her doctor and ER doctors. It was the scariest experience our family has had. She had gone to the doctor two weeks before this and we discussed giving her the vaccination, but since I didn't have her immunization card we decided to wait till her next appointment. What a mistake.

— Jennifer, Auburn, Calif.

I came down with meningitis in February of this year. I had to have brain surgery as a result of it, and I'm still fighting side effects from it. I'm a 60-year-old female, and I was working full time but [now] am only able to work part time. I've lost over 90 pounds and have a terrible taste in my mouth at all times, making it hard to eat. My doctor is investigating what is going on and I'm hoping for recovery soon.


My ex-boyfriend contracted the disease about five years ago. At first, the doctors couldn't figure out what was wrong with him. He was in intensive care for two weeks. He lived, but he has short-term memory loss, and his right side doesn't work as well as it used to. It is hard to see someone who once was so independent depend on other people to remind him of appointments and other things.

— Lisa, Bismarck, N.D.

I contracted meningococcal meningitis when I was 19, in 1996. I was in the hospital for 49 days and in physical therapy for two years. It left me with large scars on my legs, small scars on my arms and I lost the tips of two toes. It was very scary and painful. I was in art school at the time, and when I went back to school after being in the hospital I used my art to help me process the experience. ... The scariest thing about the disease is that one day I was fine, and the next day I almost died. The best thing about it for me is that I got better every day and did not die; this has fueled my passion for life and contemplation in my art.

— Sarah, New York

My husband contracted meningitis two years ago, from where we have no clue. He had a horrible headache, he was sick to his stomach and he had a backache, much like flu symptoms. He almost died; in fact, the doctors couldn't understand how he was alive after having the symptoms for several days. He is now deaf. At least I still have him, thanks to the quick thinking of the ER doctor that treated him, and for that I am thankful.

— Anonymous

I had viral meningitis when I was in my early twenties. I can't imagine what it's like to have bacterial. Anyone who survives bacterial has a lot of strength. I thought what I had to go through was painful, but it means nothing seeing the articles and [video] clips of those who have survived bacterial meningitis. ... I will never forget the headache I had. I've had migraines my whole life, and that's what I initially thought was wrong with me. I could barely walk, and any form of light brought tears to my eyes. I thank God that I went to the hospital for what I thought was a bad migraine and the great hospital staff for taking their time and realizing there was something more serious going on.

— Caryn, North St. Paul, Minn.

Just like Ashley, our son is a student at Indiana University. He was one of the lucky ones. When he was 6 months old, he contracted viral meningitis. He spent 10 days in the hospital in Milwaukee on intravenous antibiotics, because the doctors weren't sure if it were bacterial. Justin's main symptoms were that he screamed when you lifted him up or touched his neck. A spinal tap confirmed the diagnosis. ... He has grown up as a young man who never gives up, no matter what the task.

— Milt, Glendale, Wis.

My 20-year-old son, Ben, died on Christmas Day 2001. He had had a cold and some flu-like symptoms, so he did not go with his roommate for Christmas. His friend found him dead when he returned home. When we buried him on New Year's Eve, we were unable to touch him to tell him good-bye because the pathology reports weren't in. It kills me to think that a simple vaccine could have saved his life.

— Penny, Abingdon, Ill.

My husband died from bacterial meningitis in November 1997 — just one week before our 16th anniversary. The hardest thing I've ever had to do was tell my two children that their dad had died. Initially we went to a local urgent care center (it was 7 a.m. and our doctor's office was not open yet), thinking he had a bad case of food poisoning or the flu. They gave him IV fluids and medication to stop the vomiting and he seemed better. A couple hours later his fever was 103, and we raced him to our doctor's office. We still thought it was a bad case of stomach flu. His doctor wanted him admitted to the hospital so they could get the vomiting controlled and get his fever lower. He was admitted to the hospital at 2 p.m. He was dead by 7 p.m. All his friends, co-workers, neighbors, the kids and I had to take heavy-dose antibiotics for four days. Once the vaccine was available, I made sure my children got it. It's a deadly disease that can changes lives with the blink of an eye.


I contracted bacterial meningitis a few weeks before I graduated from high school. My parents were away visiting an aunt across the country and only my younger sister and I were at home. At first, I thought I just had the flu. After 12 hours of vomiting, my sister tried to talk me into going to the doctor. I said, "No, I just have the flu." I had such a bad headache that if anyone even moved around me, my head throbbed like it was going to explode. By the time my parents came home that night, I was calling my dad "Becky" and yelling profanities at him. I don't remember any of it. They rushed me to the hospital and the doctor said that I had the flu. A nurse on duty recognized the purple rash that had started spreading across my torso and convinced the doctor to start giving me antibiotics. It was probably the only thing that saved me. I was flown by helicopter to a larger hospital in Boise. I was placed in intensive care and given a 50 percent chance of making it through the night. My older sister flew in from Seattle and my family sat outside my room thinking the worst but hoping for the best. My dad said that he knew everything was going to be OK when my older sister showed up. When she walked into the ICU my dad said, "Erin, do you know who this is?" I replied, "Dad, I'm not stupid. It's Andrea!" Little did I know I had been calling him "Becky" all night. Everyone at my high school was given an emergency vaccination. I had been at a track meet the weekend before I got sick. All of the schools at the meet also had to vaccinate their students. I was in the hospital for two weeks recovering from a disease that came on in less than 24 hours. I am so lucky! I had no lasting effects from the disease.

— Erin, Boise, Idaho