People affected by spina bifida are demanding the right to early retirement, a measure they consider urgent due to the impact of this congenital malformation on their health and quality of life. The physical and neurological consequences they face tend to worsen with age, significantly reducing their life expectancy compared to the general population. This is why they ask to be included in the same conditions as other similar disabilities, to prevent them from dying without being able to enjoy them.
On the occasion of National Spina Bifida Day, the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI)
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Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI). Photo provided.
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Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI). Photo provided.
On the occasion of National Spina Bifida Day, 21 November, the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI) launched the “Early retirement NOW” campaign so that people affected by this disease can benefit from the right to early retirement like other similar disabilities that still have no answer.
The federation has prepared a report, collecting articles and studies in which the global scientific community itself demonstrates and concludes that, people with spina bifida, the most serious malformation compatible with life, suffer a significant reduction in their life expectancy.
This report, along with that of ten other disabilities, was handed over to the Ministry of Inclusion, Social Security and Migration in March 2024 without any response so far.
The conclusion of the report is that there is a increased likelihood of death with increasing age in people with spina bifida.
Some studies, in fact, speak of a decrease life expectancy up to 26 years.
This fact makes it known They might die before enjoying retirement, if he is not granted the right to early retirement.
<img decoding="async" width="1024" height="724" data-attachment-id="361531" data-permalink="https://efesalud.com/espina-bifida-jubilacion-anticipada-pacientes/img_0044/" data-orig-file="" data-orig-size="1920,1357" data-comments-opened="0" data-image-meta="{"aperture":"0","credit":"Cristina Martin Febhi","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Espina bífida jubilación" data-image-description="" data-image-caption="
Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI). Photo provided.
” data-medium-file=” data-large-file=” alt=”Spina Bifida Withdrawal ” class=”wp-image-361531 lazyload” src=” srcset=” 1024w, 300w, 768w, 1536w, 1200w, 1920w ” data-sizes=”auto” data-eio-rwidth=”1024″ data-eio-rheight=”724″/>Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI). Photo provided.
spina bifida
Spina bifida is a congenital malformation of the spinal cord that occurs in the first weeks of pregnancy and what are its causes consequences for life which, in adulthood, tend to worsen.
In general, this malformation affects three of the main systems of the body: the central nervous system (CNS), the musculoskeletal system and the genitourinary system.
Consequently, CNS involvement produces hydrocephalus (accumulation of cerebrospinal fluid in the brain) in a high percentage of cases and a more or less extensive lack of mobility, sensation and strength in relation to the level of localization of the lesion in the brain. column.
Furthermore, these consequences worsen as the years pass, causing further health problems for these people.
Eight key points
the FEBHI He includes in his manifesto eight points that he considers essential for people with spina bifida.
- Free medical and orthoprosthetic material accurate for life. Elimination of territorial differences in healthcare and access to treatments and medicines.
- Coordinated interdisciplinary units in Hospital Centers that guarantee specialized and effective care for people affected by Spina Bifida at every stage of their life.
- Information, prevention and awareness campaigns on Spina Bifida and its reality. Campaigns aimed at society with the support of the Ministry of Health and/or Social Rights.
- Brokerage services specialized professionals who collaborate with companies to ensure the inclusion of people with Spina Bifida in the job market.
- That Spina Bifida is included in the list of disabilities included in Royal Decree 1851/2009, of 4 December, on the early retirement of workers with disabilities equal to or greater than 45%.
- Universal accessibility to products, services and environments.
- inclusive education which ensures free choice of educational center, adequate facilities, necessary support resources, lower group ratios and raising awareness of teachers, management and students about Spina Bifida.
- Inclusive free time and providing resources and support to play adapted sports.
<img decoding="async" width="768" height="1024" data-attachment-id="361530" data-permalink="https://efesalud.com/espina-bifida-jubilacion-anticipada-pacientes/img_0042/" data-orig-file="" data-orig-size="1440,1920" data-comments-opened="0" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"0"}" data-image-title="Espina bífida jubilación" data-image-description="" data-image-caption="
Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI). Photo provided.
” data-medium-file=” data-large-file=” alt=”Spina Bifida Withdrawal” class=”wp-image-361530 lazyload” style=”width:516px;height:auto” src=” srcset=” 768w, 225W, 1152W, 900W, 600W, 450W, 300W, 150 W, 1200w, 1440w” data-sizes=”auto” data-eio-rwidth=”768″ data-eio-rheight=”1024″/>Image from the “Early retirement NOW” campaign of the Spanish Federation of Spina Bifida and Spina Bifida Associations hydrocephalus (FEBHI). Photo provided.
What are specialized rehabilitation services for individuals with spina bifida?
S to specialized rehabilitation services tailored to the specific needs of individuals with spina bifida, to improve their quality of life.
These points highlight the urgent need for increased awareness, better healthcare access, and the recognition of the specific rights of individuals living with spina bifida. Advocating for early retirement, as emphasized by the FEBHI campaign, is just one aspect of improving the lives of those affected by this condition.
raising awareness about spina bifida and advocating for the rights of individuals with this condition is crucial. The FEBHI campaign is an important step in ensuring that individuals impacted by spina bifida can receive proper support and recognition, allowing them to live their lives to the fullest.