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The Importance of Providing Support and Care for People Affected by Meningitis

International Day of Persons with Disabilities is commemorated every December 3rd as a

way to promote the rights and wellbeing of people with disabilities. This year, the theme is “Fight for rights in the post-COVID era”, recognising that the pandemic has deepened inequalities globally while also placing a lot of strain on existing health services. This has had a disproportionate impact on people with disabilities, many of whom are more vulnerable to Covid-19 due to pre-existing conditions. While we’ve all been affected by the pandemic, people with disabilities, like those with after effects from meningitis and sepsis, may have had to spend longer in isolation while also struggling to access the aftercare they require.

Meningitis is a leading cause of disabilities and remains a major public health challenge in all countries worldwide, with WHO citing 5 million new cases in 2017. All types of meningitis are medical emergencies but bacterial meningitis is known for being particularly dangerous, killing 1 in 10 people affected. For those who survive, life is often very different and an estimated 13% of people who survive experience severe after effects that may include any of the following: hearing loss, vision loss, acquired brain damage, developmental delay in children, epilepsy, cerebral palsy, learning difficulties, joint soreness/stiffness, headaches, exhaustion and more. If someone contracts sepsis as a result of meningitis they may also experience organ damage, scarring and limb loss.

Jeongjun's story shows us how disability representation matters! Read his story here. To read more stories from people affected by meningitis check out our personal stories webpage.

There is no standard support model that covers all aspects of meningitis aftercare due to the wide range of possible consequences, some of which are not immediately apparent but appear over time. Effective rehabilitation after a disease as severe as meningitis requires a person-centred care approach, whereby people affected are engaged and can voice their concerns and priorities during an initial assessment after being discharged from the hospital. Tailored rehabilitation programs may involve specific interventions, like those to improve mobility, speech, or pain and fatigue reduction, as well as the provision of rehabilitative technologies like cochlear implants, wheelchairs and prosthetics. Appropriate aftercare and continuous medical attention provides vital support for people affected and yet it is often not affordable and therefore out of reach for many. In low-income countries, people affected have to face the high costs of aftercare, with a study in Senegal indicating that the loss of income due to meningitis helps contribute to household impoverishment.[1] Cost is even an issue in middle and high-income countries, with those affected sometimes having to resort to crowdfunding to pay for essential products that would radically transform someone’s life, like a wheelchair or prosthetics.

As part of WHO’s Roadmap to Defeat Meningitis by 2030, support and aftercare of people affected is one of the five priorities identified and CoMO could not agree more. In the past, measures to defeat meningitis have largely been focused on prevention because bacterial meningitis is largely vaccine preventable. WHO’s holistic approach to defeating meningitis is, in part, thanks to the wide range of perspectives that were included throughout its drafting process, such as those of patient groups. Many of CoMO’s members provided feedback throughout this process and so were able to shape the document in a way that recognises the many ways in which meningitis impacts a person’s life and, by extension, their community.

Everyone living with the after effects of meningitis deserves access to: health workers with relevant expertise, rehabilitative technologies, continuous medical care and the essential emotional and community support that CoMO members provide all over the world. It should be done because it’s the right thing to do and because for a very long time the needs of people with disabilities have not been prioritised. And yet, living with a disability is a natural aspect of life that can affect anyone due to aging, disease and medical conditions. People with disabilities are powerful advocates for change and when people with disabilities thrive, so does everyone else.

In 1882, at 19 months, Helen Keller developed a febrile illness that historians have attributed to either rubella, scarlet fever, encephalitis or meningitis. She was left both deaf and blind due to the illness, in a world that didn’t really know how to accommodate her. She learned how to communicate thanks to her lifelong companion and became the first deafblind person to get a Bachelor of Arts degree. She then became the amazing disability rights advocate and political activist that people know her as, campaigning for the rights of women, workers and people with disabilities and being listed as no. 5 in Gallup’s List of People that Americans Most Widely Admired in the 20th century.

Today, people with disabilities are still underrepresented in every sector of our societies, even though their inclusion helps make what was previously considered impossible possible. Théo Curin, meningitis survivor and Paralympian swimmer, became the first person on record to swim across the longest stretch of Lake Titicaca, from Copacabana in Bolivia to Puno in Peru, covering 120km (74.5 miles) 3,800m above sea level. In 2016, astronomer Wanda Diaz Merced held a TED talk and described how the way she approached work changed dramatically when she lost her sight due to extended illness. Astronomers typically relied on visual means to do their work but Wanda realised that scientific data presented in a visual plot could be translated into sound. This process, sonification, has been around for a while but is underutilised, not only excluding certain people from astronomy but also limiting the data available for analysis and inhibiting possible discoveries.

As we build back better from the onslaught of Covid-19, we can all play a part to ensure that everyone’s voices are heard so that we do not underutilise the human potential each and every person has. An essential part of defeating meningitis is making sure no one is left behind so here are some questions we can all ask to hold ourselves accountable:

  • How can I do more to learn from the experiences of people with disabilities?

  • How can I be supporting people with disabilities in my community?

  • Are there any initiatives focused on reducing barriers for people with disabilities that I could get involved in? Could I perhaps offer my time, expertise or money? Look to organisations run by and representing people with disabilities.

  • How can I make my work more accessible?

  • How can I mainstream accessibility where I live and work?

Join the discussion and celebration on social media with the hashtags: #IDPD | #EveryoneIncluded | #CRPD

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References: [1]

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