Today is World Radio Day and what better way to honor it than echoing the emotions it causes us. This morning at Onda Cero, Carlos Alsina read an emotional letter that touched us very deeply, a letter written by hand by the father of a three-year-old boy with juvenile dematomyositis, a rare autoimmune disease, recently detected.
"Until three months ago I was happy and I didn't know it" It is one of the most impressive phrases of the letter that we reproduce below and that leaves us a moving message.
🔊The moving letter from a listener from @MasDeUno to @carlos__alsina: "Until three months ago I was happy and I didn't know it" # DíaMundialDeLaRadio📻 //t.co/hsF6RNAWeu
- Onda Cero (@OndaCero_es) February 13, 2018
"It is the first time in years that I take a pen and stand in front of a blank page without using a text editor. The reason is simple: the occasion deserves it.
My name is German. I have lived with my partner for nine years and I have two children aged 3 and 1, Marcos and Angel.
Until three months ago I was happy and didn't know it.
With my partner's work and mine we lived well, comfortably. We had a typical Spanish summer, with an all-inclusive hotel on the Huelva coast.
I said that until three months ago I was happy. At the beginning of October Marcos, my three-year-old son, appeared a reddish spot on his nose that gradually spread across his face. There were also strange symmetrical grains in some joints of the body. We noticed that he asked us to hold him in his arms continuously, but we attributed him to the jealousy he might have of his little brother.
Two months later, after consulting five doctors, receiving 27 punctures, x-rays, resonances, electromyographs and a muscle biopsy in the left thigh, Three letters compressed my chest. D. M. J.
It took me a month to pronounce his name correctly: Dermato Mio-sitis Juvenil.
The first part of the word removes iron from the reality of suffering from this disease. Sounds like acne, right? Something aesthetic.
The problem comes with the second part of the word; Myo-sitis, that is, muscle inflammation.
The most terrible comes with the third: Juvenile. The seriousness of this third I think it only reaches your soul if you have children and you stay for a month in the mother and child hospital.
DMJ is a rare autoimmune disease. Your immune system is no longer a faithful guardian to become a ruthless dragon that attacks the musculature, skin, blood vessels and sometimes vital organs. It causes skin, muscle injuries, lack of mobility, pain, tiredness.
There are those who call this disease the "Invisible disease" because the only visible thing is skin lesions. For the rest, the child seems like a "lazy" kid that all he wants is to lie, sleep, not go to school and carry him everywhere.
Luckily, Mark the Dragon just took his breath and said "I'm in you and I can bother you."
But only with that, Marcos can no longer get on the bed, he cannot walk more than 30 meters without sittingHe has had to change the slide through the park bench and my shouts have changed so that he would wait for me in the zebra crossings for my shouts of encouragement to keep walking.
Unfortunately, this disease has no cure. You can't kill the Dragon. We can only sleep it, although at the price, high, of the side effects of medications.
Fortunately for me, we are not alone in this fight. Marcos, Rafa, Zoe, Ana, Lucia, Daniel, Beltran, Andrés, Nancy, Henar are some names from a small list of elite warriors who are in the front row fighting against this Dragon. They know that victory will only be achieved when they kill the dragon and share the treasure so jealously guarded: his childhood.
The reason for this letter, Carlos, is to make known the daily struggle of these heroes so that doctors, parents and society in general do not take, like me, a month to know how to pronounce these words: Dermato Mio-sitis Juvenil.
Without more to say and apologizing for my calligraphy,
German Sevilla.
Montilla
February 2018 ".
Face the diagnosis
It is difficult to put on the skin of parents who receive the blow of such a diagnosis. From one day to the next a spot appears on the face that extends, symptoms of fatigue that you attribute to jealousy, analysis, hospitals and suddenly the bucket of cold water: they tell you that your child has a rare and incurable disease.
A "Dragon", as German calls him, who has woken up and cannot be killed. It only remains to fight to sleep it.
What is juvenile dermatomyositis?
According to the AEP, the juvenile dermatomyositis is a rare, serious and chronic disease, of autoimmune nature and beginning before the age of 16. Its cause is unknown, although there is a tendency to think that the trigger could be a viral infection.
It is known as "the invisible disease" and is characterized by inflammation of the muscles (myositis), skin, blood vessels and sometimes some other organ of the body. It is a very rare disease that affects four children per million.
Symptoms can range from mild muscle weakness, such as difficulty getting up from chairs or turning in bed, to severe symptoms such as severe weakness or difficulty swallowing. Injuries, rashes or changes in the skin may also occur, from mild redness to severe ulcer formation, mainly on the face and hands.
Make visible the "invisible disease"
The letter has reached our hearts and we wanted to share it with you to help make this "invisible disease" visible. Put our grain of sand to contribute to talk about it and most importantly, the heroes who fight every day against rare diseases.
We also share a video starring Marc and his sister Ana diagnosed with juvenile dermatomyositis when he was five years old.
