HH/Beck: Hi David. Thanks for joining me today.
Spilker: Hello Doug. Great to be with you.
HH/Beck: Perhaps we can start by reviewing a little bit about you got involved with the MFA?
Spilker: It was purely by accident. In 1996, my son had meningitis, and he was five months old. He had a severe ear infection and it just wouldnt go away. Eventually the ear infection became pneumococcal meningitis and as a result, he had a major stroke, and had a lot of issues as a result of that.
HH/Beck: That mustve been simply the worst possible time of your life.
Spilker: Yes, it was. We werent sure what was happening, and we didnt know what was going to happen. You have to understand that even though that was only 6 years ago, information transfer was slow, the Internet existed certainly, but it wasnt in the homes of most of the regular people. The only place to really get information at that time was from Mortality and Morbidity Weekly which is not something I believe the parent of the patient probably ought to be reading!
HH/Beck: How is your son doing now?
Spilker: Hes 6 and a half years old now. He learned to speak last year, and he is way behind on expressive language. His hearing is actually OK. Seems like he has some selective hearing but otherwise, his hearing is OK.
HH/Beck: So as a result of reading Mortality and Morbidity, you were basically getting the objective medical data, with little support or counseling to help you work through it all?
Spilker: Right. The journal was focusing on the destruction of hearing, mental retardation, short life spans and other very difficult issues. In fact after reading that material I sometimes wondered if I was helping myself or hurting myself by reading this information. Well, one day, an infectious disease doc pulled us into the little room, and reviewed the CT scan with us, and I remember him saying massive wide spread brain damage.
HH/Beck: David, as a dad, I cannot imagine the impact of those words, and the emotional crisis you mustve gone through.
Spilker: Yes, it was devastating. We didnt know what to do, and we were at the mercy of the physicians. I know that for many docs, the diagnosis is a rarity, and they may only see one or two cases in their whole career. So we were really having a hard time getting through it all, gathering information and knowledge. The web was just starting to catch on, and I put a little information about my son on the Internet. As a result, I started getting emails from people who had personal experience, and that was useful for us. Some of them told us what we might expect, and others had recommendations, and some just offered support. But all of it was useful.
HH/Beck: Was there any sort of Meningitis Foundation at that time?
Spilker: Not really. Not in the USA. There was the National Meningitis Trust in the United Kingdom and I wrote to them and got some information back from them, but it really was more appropriate for the UK, and not really directly related to the issues in the USA. Well, someone from the UK suggested to me that perhaps I might want to start something like the National Meningitis Trust in the USA.
HH/Beck: And so you did?
Spilker: Yes. I put together a webpage about meningitis which was pretty basic, showing the warning signs, the symptoms, different types of meningitis, and other basic information.
HH/Beck: And at this time, that basic page has evolved into a world class website, and this might be a good time to place the hyperlink into the interview!
Spilker: Of course. The URL is www.musa.org, and the toll free phone number is 1-800-668-1129.
HH/Beck: How did you fund this effort?
Spilker: Great question. I gathered some monies from different folks and we had a total of $465.15 in the bank. The filing fee to become a 501C3 corporation with the IRS was $465.00, so we went for it, and we had 15 cents left in the bank. Before the paperwork was completely processed for the 501C3, we received a memorial donation from a banking institution in New York City. One of their principals had a daughter who recently died from meningitis, and they were very interested in supporting us. Before we knew it, we were getting donations from Chemical Bank, Chase Manhattan and the New York Stock Exchange, and we were launched, that was about summer of 1997. We updated the website, improved the information, got organized and pretty soon, we were really up and running. Pretty soon I couldnt keep up with all of the phone calls, and so we needed to hire someone to help us take care of all of the administrative and managerial stuff, and that was 1997. So, its been going very well since then, and we continue to service many, many families.
HH/Beck: David, please tell me what are the goals of the MFA?
Spilker: The goals are essentially to provide family support from people who have been through it - people who have walked down that same road. Another goal is to provide information and education to the medical professionals, and the public. Another goal is to achieve early diagnosis for anyone suspected of having meningitis.
We also support the development of meningitis vaccines, and arguably, thats the most important goal.
HH/Beck: Please tell me a little about who is at risk, and the specific red flags that families and parents ought to be looking for, which might signal the early signs and symptoms of meningitis?
Spilker: There are two primary groups of people who are most susceptible: Infants usually get pneumococcal meningitis, and, there is a vaccine that was approved by the FDA two years ago called Prevnar to vaccinate against the pneumococcal bacteria. The other high risk group includes teenagersespecially college freshman. These older kids are more likely to get meningococcal meningitis, and the vaccine to protect against this form of meningitis is called Menomune.
There seems to be a relationship between exhausted people, poor diets, and crowded living conditions, smoking, and meningitis. So lets go off to college, pull an all nighter to study for the big test, then go out and celebrate, with drinking and smoking. If the students immune system is already worn down a bit, due to a cold or something, they can find themselves being an attractive target for meningitis.
Trying to diagnose meningitis is very difficult because the symptoms can vary, and are similar to a bad case of the flu. Nonetheless, they include; stiff neck, high fever and nausea. If your joints ache, youre sensitive to light, you feel horrible, and if on top of that you also have a stiff neck that can be the first sign. Infants are not going to be able to complain about a stiff neck, and clearly colds and the flu are much more common, and much more likely. The only way to truly tell if you have meningitis is to have a spinal tap.
HH/Beck: So the bottom line is alwayscheck with your doctor as soon as you have any suspicions at all?
Spilker: Yes. Its a difficult situation because none of us want to over react, but none of us want to miss anything either. So the best thing is to call your doctor at the first signs or symptoms and immediately review the situation with the physician. Of course the readers will get lots of good information from our website too, and thats another recommendation that I really believe inespecially the SYMPTOMS section. Read and learn, and then you can better address the issues if and when you need to. You might save someones life.
HH/Beck: David. Thanks very much for your time and expertise on this very interesting topic. I want to personally recommend that each reader visit your website to learn more about meningitis.
Spilker: Thanks Doug, its been a pleasure working with you.
For more information on meningitis, CLICK HERE
Special thanks to Advanced Bionics for their support of this interview. For more information on cochlear implants, CLICK HERE.
HH/Beck: Hi David. Thanks for joining me today.