A few weeks ago, the winners of “They Count” were announced, the solidarity initiative through which the Malasmadres Club and Cinfa support women and mothers facing illness or disability. Although all of the awards are well deserved, there is one that is even more special this year, and that is the one that was given to her Sandra ArjunaA woman, despite directly suffering from disability, He dedicates his time to helping others.
In fact, she signed up for the They Matter Awards just so she could vote for other women, because this year only participating women can vote. “I have always participated by voting, but since this year to vote, you had to be one of the participants, I registered. To my surprise, because I did not even participate on my networks that I was participating in, I won.”
Despite the surprise, she couldn’t be happier and more grateful, especially since it meant highlighting her illness. Neurofibromatosis type 1an extremely rare and invisible disease that affects the central nervous system and can cause many symptoms throughout life. “Some appear, others do not. For me, the most serious are Fibroids Which I have all over my body, especially my entire torso. I have, from my chest to my thighs, full of fibroids that grow, are uncomfortable, painful, stick up and sometimes bleed. In fact, even if I go to the best hotel in the world, I always bring extra towels because the rest makes me bleed.
Moreover, it was lost Restless legs syndrome — which she had to control with antiepileptics — chronic migraines and severe scoliosis that forced her to wear a corset until she was 18 and Gradual visual impairment“With my left eye I can barely see and I know I will lose my sight in a few years, but as long as that doesn’t happen, I prefer not to think too much about it,” he says. “I now have a recognized 39% disability, but the review goes back to 2007, so I now have to have a much greater disability due to my sight loss.”
Despite everything, Sandra thinks of others more than herself and decides to give back Much of his life for othersWhether on a professional or personal level.
Sometimes, the hardest thing is not the physical pain, but the despair of not finding solutions
Activist in the field of childhood cancer and rare diseases
In addition to all the health problems that Sandra suffers from, she suffers from Polycystic ovary syndromeWhich prevented her from achieving her dream of being a mother. In fact, not being able to have children is defined as an “extremely painful cross” that even led to her falling into depression.
After a period of depression, she took action, promising herself that she would help the children who needed her most, given her inability to be a mother. “For 13 years she became a volunteer in children’s associations. Childhood cancer To help families and started showing it on social networks. Later I made it extendable to Rare diseases We created a very large support network, which grew even larger with the pandemic, when I started making solidarity offers with well-known people.
Sandra, a social educator by profession, already has a network of more than 120,000 followers on Instagram, where she shares stories of the families she helps, “Above all I accompany them, especially children and mothers, who are often left alone in hospitals…and in the end you end up being part of their lives and that is very beautiful.”
An award for improving your quality of life
Thanks to this honor from Ellas Cuentan, who gives Sandra a prize of 3,000 euros It will cover specialist medical treatment To alleviate the effects of her disease, “The fibroids I suffer from all over my body are painful and annoying, which prevents me from leading a normal life. Daily activities such as bathing have become a challenge, since Fibroids They break easily, causing constant pain and bleeding, which causes me deep despair. Sometimes, the hardest thing is not the physical pain, but the despair of not finding solutions, however, of public health “It is not covered, because it is benign. They tell me it is an aesthetic issue,” he says indignantly.
What Public Health covers is the mammogram, but part of the award will likely also be used to pay for it, because he has been waiting to get it in the Andalusian health system for six months.I consider myself one of those affected by breast cancer screening in Andalusia. “I have a lump in my breast and have been waiting for a mammogram for months and have a history.”
She does this for herself and to reassure her mother, who she confirms has been concerned and devoted to her all her life. He was able to see, walk or talk…And here I am.”
Here though bullying Who suffered because of his disabilityharassed so much that they threw her down the stairs of the institute to check if her corset could hold up and she ended up with five broken ribs and consequences that still last…
…And here he is, after his parents made every material and financial effort so that he could enjoy a good life, “I used to go to rehabilitation from the age of 5 to 20 every day, except on Saturdays, and It was all paid for by my father. They have always been devoted to me. My father left us last year and took his last breath for me, and my mother still suffers for me,” she recalls enthusiastically, “and thank God I was always a child.” Emotionally strong“, he insists. A strength he transmits to all the families he accompanies in the worst moments of their lives.
His award could not be more deserving.
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