Support for When Meningitis Strikes

by Victoria Porter

Published 3/19/02; © Medscape 2002

When Frankie Milley lost her 18-year-old son, Ryan, 3 1/2 years ago, she knew nothing about meningococcal meningitis, the disease that claimed his life. But within a few days of his death, she learned that meningitis is relatively common and often fatal, but can often be prevented with a readily available vaccine. Says Milley: “Within 48 hours of his death I heard about Menomune, a vaccine that could have saved Ryan’s life.”

Turning a tragedy into something that can help others does not come easily to most people. However, Milley was determined that other parents should not have to lose their children to a preventable disease. She quickly realized, based on her own experience and from talking with other parents, that the information on meningitis was not reaching the people who most needed to hear it. She began to work with other parents around the country, and a group of them met with Aventis, the manufacturer of Menomune, to learn more about the vaccine and about the disease. She visited with parents and children in hospitals and in their homes to offer support and information, and she became a member of a national support team for the Meningitis Foundation of America, which enabled her to network with more people and gather more information and support.

So started Meningitis Angels, a nonprofit organization dedicated to educating parents, politicians, and physicians about the risks of bacterial meningitis and the ways it can be prevented or treated. Anyone who has lost a child or other loved one to bacterial meningitis will find some measure of comfort from this organization, founded in February 2001 by Frankie Milley. There are beautiful poems on the Meningitis Angels Web site that will strike a chord in the hearts of anyone who has lost a child to meningitis or who is caring for a child suffering the after-effects of the disease.

Among the organization’s goals are providing at-home and in-hospital support for caregivers, coordinating volunteers for life and grief support (personal group, online, and telephone), offering public and school education about meningitis and the vaccines administered to prevent them, assisting with funeral service expenses when the surviving family members are not covered by life insurance, providing special tutors to help children affected by meningitis or its sequelae who fall behind in their studies, and providing networking services for obtaining various forms of assistance.

Before founding “Meningitis Angels,” Milley got involved with lobbying and legislative work and collected over 5000 signatures to petition for the expansion of Texas State Senate Bill 31 (the Meningitis Prevention Bill), written by Senator Judith Zaffirini, which was initially designed to educate college students about the symptoms, prevention, and treatment of meningitis. Milley created the expansion to this bill to include children of all ages as part of the educational initiative, and it was signed into law in May 2001.

Funding for Meningitis Angels has largely been provided by parents who lost a child to meningitis and who are united in the common goal of protecting others from the tragic consequences of bacterial meningitis. If you wish to volunteer your services or make a financial contribution, contact: Meningitis Angels Heaven and Earth Bound, INC., P.O. Box 448, Porter, Texas 77365; tel. 1-800-574-1998; email meningitisangels@aol.com

Other Sources of Support and Information

The genesis of other organizations that commit their resources to educating and supporting meningitis victims and their loved ones was similar to that of “Meningitis Angels.” Concerned parents and other people who have lost family and friends to bacterial meningitis in Canada, the United Kingdom, and the United States have established research foundations designed to educate the public about the warning signs, causes, prevention, and treatment of meningitis.

One such organization is The Meningitis Research Foundation of Canada, spawned from a mother’s determination to prevent meningitis from affecting other families or communities after the tragic loss of her 20-year-old son, Michael Longo, in 1975. This foundation promotes education and research in order to prevent death and disability from meningitis and other infections of the central nervous system. Links to news articles, an event calendar, a discussion board, descriptions of the various types of meningitis, and a section on vaccines can be found on this site. The primary causes of the 1000+ annual cases of bacterial meningitis in Canada, detailed in the “Meningitis” section of the site, are listed in Table 1.[1] Types of fungus that can cause fungal meningitis are also mentioned in this section. Personal anecdotes are posted on the site, so that individuals can share their experiences and their pain. Some of the stories have happy endings and offer encouragement about positive outcomes.

Members of The Meningitis Research Foundation in the United Kingdom, founded in 1989 as a national charity, participate in press and awareness campaigns by raising funds for scientific research and provide support for families affected by meningitis and septicemia. This organization has grown into a major international charity with more than 4000 members and volunteers. The opportunity to become actively involved in the organization has helped many members to cope with their own experiences by supporting others. All members receive a quarterly newsletter, Microscope, to keep them updated on the foundation’s upcoming activities. In addition, member meetings are held throughout the UK and the Republic of Ireland to provide the opportunity to get together with other people who have been affected by meningitis and septicemia and to discuss fundraising and awareness initiatives. According to testimony from a woman who called upon the Foundation for support after her youngest sister died, “It never occurred to me that a normally healthy person could fall ill and die overnight. After all, these tragic things only happen to someone else. . . . Through an extensive research programme, Meningitis Research Foundation is . . . increasing people’s awareness of the signs and symptoms, and provides much needed support for those who have had the misfortune to have experienced the disease.” To make a donation, become a member, or get involved in fundraising efforts, contact the Foundation at one of their branch offices, listed in the “Related Links” section.

An excellent source of information about vaccination is The National Meningitis Trust (UK), which also offers a wealth of up-to-date information on meningitis research, news, events, and fundraising efforts. Another particularly useful section of this site is the Emergency Info, where you will find a description of all of the possible symptoms of meningitis to look for in babies as well as in adults and older children. The Events Calendar highlights upcoming events such as the 8th annual “National Coffee Morning,” one of the largest fundraising events in the fight against meningitis, and the “Antrim Glens & Coast Cycle Challenge,” a sponsored bicycling event that takes riders through 4 scenic glens on the coast of Northern Ireland (riders must pay a registration fee and raise a minimum of £750 in pledges). “B aware,” the largest campaign the National Meningitis Trust has ever mounted, was designed to educate teenagers about the dangers of meningitis. In this nationwide educational effort, 6000 secondary schools have received approximately 750,000 “symptoms cards” for students to keep, thousands of posters, and information sheets giving details of the disease and profiling teenagers who have contracted meningitis.

What Is Meningitis?

Meningitis is a serious infection of the membranes (meninges) that surround the brain and spinal cord. Viral meningitis is generally associated with less severe outcomes than bacterial meningitis; the predominant clinical manifestations are vomiting, headache, and fever. Although fatalities from viral meningitis have occurred, such as in cases of enteroviral infection, mortality rates are low. During the echovirus type 16 meningitis epidemic in Cuba, for example — which affected about 17,000 people (mostly children > 15 years of age) during the period from May-September 2000 — no deaths were reported and all patients recovered completely.[2]

Bacterial meningitis, if left untreated, can have grave consequences, such as permanent hearing loss, paralysis, brain or other organ damage, and death. The bacterial infection can linger for days, weeks, or even months without manifesting symptoms.[3] Each year, 1.2 million people contract bacterial meningitis, and some 135,000 people die from the disease.[3] It is fatal in 1 out of 10 cases, and 1 out of 7 survivors is left with severe handicap, such as deafness or brain injury.[4]At any given time, about 10% to 25% of the population are carriers. Only rarely do the bacteria overcome the body’s defenses and cause meningitis.[4]

The many varieties of this disease are listed in Table 2. The most deadly forms are pneumococcal and meningococcal meningitis.[5] Meningococcal meningitis, often associated with septicemia, is endemic in temperate climates, and a steady number of sporadic cases or small clusters occur, with a seasonal increase in winter and spring.[5] Sub-Saharan Africa has experienced epidemic cycles every 8-12 years in the past, and the intervals between major epidemics have become shorter and more irregular since the beginning of the 1980s.[6]

The most recent meningococcal meningitis pandemic, which began in 1996, has so far resulted in approximately 300,000 cases being reported to the World Health Organization. The most affected countries have been Nigeria, Burkina Faso, Mali, and Niger.[6]

Streptococcus pneumoniae and Neisseria meningitidis are the leading causes of bacterial meningitis.[7] Before the 1990s, Haemophilus influenzae type b (Hib) was the leading cause of bacterial meningitis, but new vaccines being given to all children as part of their routine immunizations have reduced the occurrence of invasive disease due to this organism.[7]

High fever, headache, and stiff neck are common symptoms of meningitis. Other symptoms may include nausea, vomiting, aversion to bright lights, confusion, and sleepiness. In infants younger than 2 years of age, however, the classic symptoms of fever, headache, and stiff neck may be absent or difficult to detect, and the infant may merely appear to be slow, lethargic, or irritable, or to be eating poorly. High-pitched crying; a blank, staring expression; and pale, blotchy skin color may also be indicative of the disease in infants.[4] As the disease progresses, patients of any age may have seizures.[7]

Persons who contract bacterial meningitis must seek hospitalization immediately and are treated with antibiotics. Neurologic symptoms may persist for several months before the patient fully recovers. The disease progresses so rapidly in some cases that, despite early treatment, the patient dies within 48 hours.[8] It takes patients a long time to recover from bacterial meningitis. After-effects of the disease are shown in Table 3.[9]

Available Vaccines Against Meningitis

There are now safe and very effective vaccines against the major causes of bacterial meningitis in infants and children: meningococcal group C conjugate vaccine, Haemophilus influenzae type b conjugate vaccine, and pneumococcal conjugate vaccines. All 3 vaccines are necessary because the protection is specific: each vaccine protects only against the bacteria from which it is made and provides no protection against other bacteria. Combined vaccines against group C meningococci and pneumococci are expected to become available starting in 2005, according to The Netherlands Health Council.[10] No vaccine is available yet for group B meningococcal strains,[11] but an experimental vaccine is under development.[10]

There is no vaccine that can prevent all forms of meningitis and septicemia. Menomune protects against all but 1 (serogroup B) of the 5 main serogroups of meningococcal meningitis: A, B, C, Y, and W135, with an estimated efficacy rate of 85% to 90% — and unfortunately, serogroup B accounts for almost half of all cases of meningococcal meningitis.[12]

The existing 23-type vaccine against pneumococcal infection (Prevnar) is only partially effective (covering an estimated 50% to 60% of invasive pneumococcal infections)[10] and does not work in children under the age of 2 years. A new vaccine, 7-valent pneumococcal conjugate vaccine (PNCV7), has stronger, more lasting protection against the 7 main serotypes of pneumococcal infection (which are responsible for 85% of all pneumococcal disease) and has been in use in the United States since the summer of 2000; it has recently been licensed in Europe.[13]

The US Food and Drug Administration (FDA) recommends giving the vaccine in 4 doses at 2, 4, 6, and 12-15 months of age to all children up to 24 months of age.[10] In addition, the FDA recommends vaccination of children aged 2-5 years who are at high risk of pneumococcal disease, including those with HIV or AIDS, sickle cell disease, or weakened immune systems.[14]

Plans are under way to combine current vaccinations against diphtheria, tetanus, pertussis, polio, and Haemophilus influenzae type b into 1 injection; this is anticipated to occur in 2003 at the latest, and will enable vaccination against pneumococci at ages 2, 3, and 4 months. A report entitled Universal Vaccination Against Meningococcal Serogroup C and Pneumococcal Disease can be ordered via email at order@gr.nl.[10]

A new vaccine composed of the purified polysaccharide linked to a protein, called the Meningococcal Group Conjugate Vaccine, has been developed for group C meningococci and was approved for use in Canada in May 2001.[11] The new vaccine is reported to be very safe and stimulates production of high levels of protective antibodies in infants and young children. Studies in Canada of infants immunized with the new vaccine at 2, 4, and 6 months of age showed that local tenderness, redness, and swelling occurred less frequently after the group C conjugate vaccine than after the combined diphtheria-tetanus-acellular pertussis-polio vaccine (Pentacel). Rates of fever, irritability, crying, and other systemic reactions were not increased by the addition of the group C conjugate vaccine. Since November 1999, a large-scale immunization program was undertaken in England and Wales to immunize all children younger than 18 years with the group C conjugate vaccine and to use the vaccine for routine immunization of all infants starting at 2 months of age. Use of the vaccine has been very successful in controlling all forms of disease caused by group C meningococcus.[11]

Related Links

• Hydrocephalus Association
• Meningitis Angels
• Meningitis Foundation of America
• Meningitis Research Foundation
• Meningitis Research Foundation of Canada
• National Foundation for Infectious Diseases
• National Institute of Allergy and Infectious Diseases (NIAID)
• National Institute of Neurological Disorders and Stroke (NINDS) Encephalitis and Meningitis Information Page
• The National Meningitis Trust

References

1. Meningitis Research Foundation of Canada: Meningitis.
2. Sarmiento L, Mas P, Goyenechea A, et al. First epidemic of echovirus 16 meningitis in Cuba. Emerg Infect Dis. 2001;7:887-889.
3. MediFocus MedCenter. Bacterial meningitis: Introduction.
4. Meningitis Foundation of America.
5. Meningitis Angels.
6. World Health Organization: Meningococcal meningitis fact sheet.
7. Centers for Disease Control and Prevention, Division of Bacterial and Mycotic Diseases: Meningococcal disease.
8. MediFocus MedCenter: Bacterial meningitis.
9. Meningitis Foundation of America: After meningitis.
10. Eurosurveillance Weekly. Issue 5. January 31, 2002.
11. Meningitis Research Foundation: Are there vaccinations for meningitis and septicaemia?
12. Meningitis Research Foundation of Canada: Meningitis vaccines. January 26, 2001.
13. Olin Health Center: The Menomune Vaccine.
14. Meningitis Research Foundation of America. Hot news: Press release regarding Prevnar.