Regarding Buckets of Ice and Saving the World

I want to change the world. I want to help people everywhere to find happiness, health, peace, and safety. I don’t want people to suffer. If there were a way that I could show everyone that we all have more in common than we usually see, I would. If I could end hate, bigotry, racism, sexism, domestic violence, addiction, pain, and suffering, I would! In a heartbeat! For everyone!

As it is, I do what I can, and I try to treat people well and support others.

Seeing so many people I know participating in the ALS Ice Bucket Challenge made me realize that I would probably be called out soon to take the plunge. While it looks like fun, and it has certainly gotten a great deal of attention and donations for the cause, I will not be dumping ice water on my head. I did, however, make a donation to the ALS Association to support the cause. If you think it isn’t as fun without the water – don’t worry! Instead of putting a bucket of water on myself, I chose to donate to Charity Water, to bring clean drinking water to people who do not have access. Right now, they are having a campaign to raise $1M to bring water to people in the Sahel region in Africa.

Don’t worry, I’m not trying to rain on anyone’s parade. I think the Ice bucket Challenge is a highly effective awareness campaign! However, I also have a rare condition –  Ehlers-Danlos Syndrome. Because of this connective tissue disorder, I have extremely hyperflexible joints that dislocate quite easily and very frequently. I also have early-onset arthritis, and live with debilitating pain. If I were to lift a bucket above my head, I would most likely dislocate at LEAST my right shoulder and my left wrist, which are fragile from previous injuries. However, the tensing of muscles in my body often tugs my ribs out of place, which sometimes makes it very hard to breathe.

My hyperextended foot/ankle.
My hyperextended foot/ankle.

This is a condition that most doctors I have encountered have never heard of. If you would like to learn more about Ehlers-Danlos Syndrome, you can find information here, here, and here, among other places. If you would like to donate toward helping research this condition (which truly affects the quality of life), you can do so here. Ehlers-Danlos Syndrome is a genetic disorder, and my young son also suffers from the condition, requiring physical and occupational therapy because he has experienced excruciating joint pain in his hands and other joints since preschool.

I know that I cannot fix the entire world. I was very sad when too many of my veins had completely collapsed due to Ehlers-Danlos-related fragility for donating blood to still be a safe practice for me. I volunteer whenever possible, and become frustrated on the days when I am unable to walk, because I would like very much to get out there and do more! Perhaps, some day, there will be a writing marathon, or gaming for charity that I could participate in, since the walks and races i used to participate in are no longer viable for me.


Still, no matter what you do, try to take some time to be kind to your fellow human beings, and know that most people on this planet are truly good people at heart ❤


4 Comments Add yours

  1. It is hard seeing another rare condition get loads of attention. It’s not that I begrudge ALS at all, I just wish I knew how to do it for EDS! Well done for overcoming that feeling to donate to them and the water project.

    One tiny point – when I checked if I could give blood, they said people with EDS couldn’t.

    1. Jenifer Rosenberg says:

      I gave blood for years, and was very up-front about having Ehlers-Danlos Syndrome. I guess they did not know about it, because they said that it was absolutely fine. However, when I mentioned it to my doctor, she told me that I shouldn’t be doing it – ESPECIALLY since I have a history of vein collapse.

      1. Yes, I think it would depend on their knowledge of the condition.

        When I gave blood before my diagnosis, I had quite a bad reaction. Fainting, vomiting and felt ill for days. But not sure what caused it.

  2. Lisa says:

    OMG! Gaming for charity! What a great frickin idea!!! Let’s work on that!

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