Do you know what Dravet Syndrome is? And Dent Syndrome? Surely you have not heard of these diseases, because in fact it is two of the many rare diseases that are classified as affecting a very small amount of population. World Rare Disease Day is celebrated next week. Cycling also does a lot for them every day, with solidarity projects that are worthy of mention.
Rare Diseases and cycling
There are many occasions in which a person, indirectly facing a rare disease resulting from the affection of a friend or close family member, does not know how to react. And to some of them, it gives them to grab the bicycle and go out to do kilometers and kilometers to make a little noise in order to claim and make known these diseases, to try to make the investment for research on them increase and The pursuit of a cure is pursued.
There are thousands of rare diseases, and thousands of solidarity projects, of which we have rescued some.
Two cycling projects on rare diseases and a third better known
World Rare Disease Day is celebrated next week, and today we explain some solidarity projects related to cycling and rare diseases.
Do you know what Dravet Syndrome is? Known as Severe Childhood Myocardial Epilepsy, it usually appears in babies between 4 and 12 months old, who suffer convulsions and prolonged and recurrent febrile processes. It affects only 1 in 20,000 births, which is why it is not investigated more about its causes or receives support and resources to alleviate or control it. The curious thing about Dravet Syndrome is that about 4 or 5 years is usually stabilized, so that taking care of that first stage of life could not only discover a cure, but also take care of the little ones so that they can pass that phase with all the guarantees .
RetoDravet is a cycling project that was born with the firm objective of visualizing this rare disease through the bicycle as a means. Companies like Microsoft or BBK have collaborated with this organization, and for a few years Catlike has also done so in a totally altruistic way. Currently, the team of RetoDravet continues to participate in many cycling races wearing their unique clothing that makes the problem visible.
Second, we will talk about Dent Syndrome. This rare disease affects the renal system and more specifically the kidneys, which begin not to work properly for no apparent reason. Eva Jiménez experienced it suddenly with her son Nacho. The most curious thing in the story is that Eva, in addition, suffers from ALS, a much more famous disease unfortunately and which have been carried out worldwide campaigns to make it known.
Despite these personal conditions, Eva Jiménez completed the Titan Desert and other tests, with the help of a team that the legendary cyclist Perico Delgado became part of. Together they founded the Asdent Association, sponsored by Santi Millán, actor and television presenter and through it they continue working day by day so that society becomes aware of the difficulty of living with a patient who suffers from this rare disease. Cycling, as an escape route, effort and challenge to get focus on these diseases.
And if Eva suffered ELA, Pedaela is just another project that is responsible for making this disease visible. Amyotrophic Lateral Sclerosis, better known especially by illustrious people like Stephen Hawkins, has received several information campaigns, among which he highlighted that fun idea of throwing a bucket of water over it and sharing it in networks. The question and the objective is always common: to make it known, to talk about it, to try to raise awareness and increase investment in research.
With these and an infinite list of solidarity projects, we try to give voice also to this group of rare diseases that do not receive the necessary help to investigate their cure. It is hard to suffer an illness, but harder it is that it is not profitable for society to investigate it. So talking about them and riding a bike is our best way of not forgetting the people affected.