Help Support Bug
You may or may not know this, but May is National Ehlers-Danlos Awareness Month. This year I decided that it would be a great idea to support Bug by joining in the Arthritis Walk. I looked at the groups in Iowa and found that there was one walking on May 3rd, and so I decided that I was going to do it!
I talked to "Bug" and she is going to walk with me. I also have a good friend who said she would join us. At that point I thought "hey - I should form a team"! So I did - and we're inviting parents and children.
I am hopeful that we will get a nice group together, but since the walk is about 2 hours away I'm not sure. I'm going to cross my fingers though, and I've decided to hit the pavement hard to seek out donations. I am hoping that this is where living in a small town will really help, I don't think anyone else will be doing this walk. Plus, we know a ton of people and I'm hoping they will be willing to make a small donation in honor of Bug. I guess we'll see!
If you are interested in making a donation to the National Arthritis Foundation in honor of Bug and our walk, you may do so by clicking here. I know a lot of people who read this are struggling already and I don't want you to feel you have to donate. I just thought it would be silly to not at least link here in case someone can and wants to donate.
In case you are wondering why we are walking for Arthritis, it's because EDS actually is considered an arthritic condition. While I'd love to walk for EDNF and have all of the funds go directly to Ehlers-Danlos Syndrome, EDNF just isn't at that point yet. Walking with the Arthritis Foundation will support EDS as well as other Arthritic Conditions, and it will allow Bug to feel empowered as well as allow her to meet even more "kids like her". (that's what she always says) I am hoping to make shirts for our team to wear, but it will depend on how many people walk with us. (more people = more money for shirts) Bug and I will wear them, and they will mention EDS. I am hoping someone will take notice and we can attract some interest in Ehlers-Danlos while there.
Thanks for reading - and you might consider looking and seeing if there is a walk happening sometime soon in your own area. :)
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3 comments:
I'll definitely be looking for a walk in my area!
I didn't get to comment on your last couple posts because my life is sort of insane right now, but I have to tell you:
1. Those ring splints are seriously pretty! The thought of having to wear ring splints sometime probably in the near future doesn't fill me with that much dread anymore after seeing the photo.
2. Bug will definitely come across A LOT of people who don't understand her condition and/or don't believe her pain is legitimate, no matter how old she is. BUT in the face of all of that, it makes a WORLD of a difference to have someone--even if it's just one person--who's on your side. I know this for a fact because there has never been a person like that in my life. You won't be able to change or educate everyone Bug comes in contact with, but your efforts to do so and your being "on Bug's side" are just as important.
I too love the rings. I am actually starting to wonder if I might need some if my fingers keep acting up. Of course, then I might be forced to admit I am the one who is carrying the EDS gene. It's one thing suspecting it, it's another seeing the geneticist and having the official diagnosis. ;) But you're right, at least they are pretty.
You are right about the people who don't understand. I hate that part. You're also right about at least she has someone at home who does, I have gotten several e-mails from people who didn't have that and were forced to do painful things or made fun of even by their own family. I am thankful for that - but I still am sad about the fact that there are so many closed minded people out there ready to believe the worst in everyone.
Thank you as always for your thoughts and insights, they are most helpful and I look forward to them! :)
I cautiously hope that the current state of ignorance surrounding EDS will gradually improve with time and things will be different by the time Bug's an adult. I mean, can the medical community and the general public really maintain this kind of ignorance for another decade???
And I just clicked over to the NAF site--she's so pretty!! Everything you described about her really seems to somehow come out in that picture and her smile. If I lived closer or had my own reliable transportation I'd be there too, but I'll be cheering for you guys from here instead!
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