Over the past week, there have been a LOT of search requests coming to my blog looking for a combination of the following keywords: Hannah with the rare disease that met Selena Gomez. At least a hundred or so in the past week.
Apparently there is a teenager named Hana Hwang who also has a rare disease, Progeria, that met Selena Gomez last month. The amount of exposure to the disease Progeria, the one where children age rapidly, that was raised by this one visit must be staggering.
Progeria is one of those rare diseases that are actually known to a good number of people because of its unique physical appearance and the fascination of how the disease process affects the human body. It is amazing how a disease that has only about 80 known cases in the world (according to Wikipedia) has gained so much attention in documentaries, celebrity visits, etc.
Gaucher’s Disease, well, doesn’t have a unique physical appearance so unless you knew the child had Gaucher’s, the most you would notice is that the child’s eyes may be crossed (strabismus) as well as some physical and/or developmental differences. Nothing so striking that you would be able to see a Gaucher’s 2/3 child and say, “Hey, that child must have Gaucher’s Disease.”
Maybe it has happened, but I have never heard of a story where a celebrity made an appearance with a child with Gaucher’s Disease. Can you imagine how much awareness could be brought to neuronopathic Gaucher’s disease by a single visit like this? There are a few hundred children living in the world right now with nGD, at least a few dozen here in the U.S.
It really just takes one amazing, heartwarming and well-intentioned visit from a celebrity, like the one Selena Gomez made a couple of months ago to Hana Hwang, to bring about public awareness to rare diseases, especially those rare diseases that take the lives of our children so cruelly like Gaucher’s, Neimann Pick type C, Krabbes Disease, Battan’s Disease, Tay-Sachs, etc.
Hopefully with the momentum that World Rare Disease Day is bringing each year (this year February 29), there will be those few celebrities who might come across a fan diagnosed with one of these fatal rare diseases and reach out to them. The amount of awareness that could be created by just those couple of hours or so could make such a difference in how the public perceives these diseases. Having recognition of these diseases like Gaucher’s by the world outside of those of us affected by them could really lead to changes in support and lead to enough funding to find a treatment!
Those of us in the fatal, childhood rare disease community really have our work cut out for us. But even though I can no longer fight to save my Hannah’s life, I will never give up the fight for awareness for Gaucher’s Disease and other diseases that take the lives of our children.
Ironically, Selena Gomez is Abby’s number one, all-time favorite celebrity. My Hannah may not have appreciated the visit with Selena Gomez even if it had happened, but Abby would have been in heaven being able to meet her!!
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