Living with Spina Bifida

Spina Bifida and, more specifically, myelomeningocele, is the most severe congenital malformation of the neural tube compatible with life and the second cause of physical disability in childhood, after cerebral palsy. It is still one of the great unknown neurological disorders, not only for society but also the causes that can originate it. Numerous organizations and foundations fight every day so that there is knowledge, information and means to stop the advance of this disease.

The reasons that cause EB are still a mystery, but it is considered that there are multiple factors that can be related to the appearance of the disease, in particular:

- Deficit of folic acid from the mother: an adequate dose must be taken 3 months before pregnancy and up to the fourth month of pregnancy. Folic acid contributes positively in the formation of the neural tube of the fetus and reduces the risk of EB.

- Other factors: genetic, environmental ...

There are two types of Spina Bifida:

1. Hidden: the defect is very slight and in most cases it may not show any symptoms, so the patient may never get to discover it.

2. Open: the severity of the pathology depends on where the lesion is located (the higher its level in the back, the more sequelae it has), the extension, and the associated malformations (for example, hydrocephalus).

EB, therefore, can affect numerous organs of the human body. It is important that from the birth of a baby we observe all possible changes that may happen and know what happens in the body so that we can treat the EB with the appropriate specialists. Early detection is "key," as Deborah Moreno and Pablo Auz, parents of a 3-year-old girl with EB, point out: "we were shocked that a congenital pathology visible much earlier was detected so late."

Broadly speaking, the most important consequences of EB are:

- Hydrocephalus

- Loss of sensitivity and muscle weakness, which can cause partial or total paralysis, below the level of the injury

- Urinary and fecal incontinence, due to weakness of the bladder and intestinal tract muscles

- Allergy to latex

- Difficulty in learning

Incontinence is the biggest taboo that patients with EB have, especially as they grow and reach adulthood. Ampar Cuxart, who did her doctoral thesis studying the medical and social situation of adult patients with Spina Bifida and the impact of different problems for these patients, explains that "the biggest concern for adult patients with Spina Bifida is urinary incontinence", ahead of other problems such as wheelchair management or skin problems.

And if life with EB is a long career, in the words of Ampar Cuxart, "the achievement of the best quality of life for these patients should be worked from birth with the family and the patient. The first idea is to treat these patients in a conventional way, not as if they were sick because they are not. All they have is a congenital malformation that makes them different in certain aspects. "

* November 21 is the National Day of the Spina Bifida, and Ontex joins the cause by collaborating with FEBHI (Spanish Federation of Spina Bifida and Hydrocephalus Associations) so that they can continue to be seen and sensitized to the population.


Dra. Ampar Cuxart, MD, PhD. Rehabilitació i Medicina Física (ORCID:0000-0003-3776-4541)


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