RSD is becoming more and more common at a younger age. In past years it was thought that only adults could get RSDS (Reflex Sympathetic Dystrophy Syndrome). It was thought that children with unexplained pain were either making the pain up, it was physiological, or that they had another form of RSD that Dr's thought was based in the muscular system.
Since more PM's are realizing that RSD can and do happen to present in children more research is being done on new treatment options and the long term-effects of RSD. It is true that children who are diagnosed earlier have a greater chance of going into remission but going into remission doesn't mean your 100% free of having RSD. Once someone has RSD even if they are in remission, it is easier for it to spread and come back with any injury he or she obtains later in life. This can be hard for children and teenagers who want to be active with their peers but have to be careful.
At this point little is know what goes on with those who have RSD long term. RSDSA is currently conducting a survey to try to understand what goes on. The results may not be published for a good while still. I have several friends who have had RSD about as long as I have and have gotten it around the time I did. Both girls seem to be having the same internal RSD symptoms like I have. One girl got diagnosed with RSD in the stomach like I did and the other girl just recently got diagnosed with RSD in her kidney. It makes me wonder if this is one of the long term effects of RSD.
Hey Erikka,
ReplyDeleteI didn't know you were a blogger too, I saw your link on your facebook post. I've been blogging for the past year and I've talked about RSD several times (obviously a lot more lately). Glad to see you are writing about it here.
Hi Amanda,
ReplyDeleteYeah I figured it might help people understand about RSD a little more coming from an RSDer's prospective rather than all of the medical websites. Ill be sure to check out your blog. Hope your doing well.
This was interesting post! Sometimes I wonder what the long term effects will be from having this. I try not to dwell, though, because I prefer to focus on enjoying my life as it is right now. What will be, will be. I will worry when/if it comes.
ReplyDeleteas mom of a 14 year old with RSD, I am happy to have found your blog. There is so much to be learned...
ReplyDeleteI try not to dwell on the long-term effects of RSD on our bodies as I love my life. Ive just noticed that many of my friends who have RSD for a long while and (the two girls I mentioned) and I are now presenting with RSD symptoms internally. This could just be a coincidence, well have to see how the RSDSA study comes out.
ReplyDeleteEllyn, I'm happy you found the blog too. I try to write as often as I can. Sometimes its sparingly due to school but please feel free to suggest topics.
Worldwide Awareness Campaign Please Help
ReplyDeletePeople and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation.
You can also send it to some members of the House of Lords.
http://www.parliament.uk/mps-lords-and-offices/lords/
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
http://you.38degrees.org.uk/petitions/worldwide-rsd-crps-awareness-campaign
http://www.thepetitionsite.com/460/118/995/worldwide-rsdcrps-awareness-campaign/
http://www.change.org/en-GB/petitions/goverments-worldwide-un-world-health-organisiation-find-the-millions-of-un-misdaignosed-rsd-crps-sufferers-across-the-world
http://www.ipetitions.com/petition/worldwide-rsdcrps-awareness-campaign/
http://www.gopetition.com/petitions/worldwide-rsd-crps-awareness-campaign.html
http://www.activism.com/en_GB/petition/worldwide-rsd-crps-awareness-campaign/40439
http://www.causes.com/causes/800617-worldwide-rsd-awareness-campaign/actions/1700679
http://www.petitionbuzz.com/petitions/worldwidersdcrps
http://www.petitiononline.com/RSDCRPS1/petition.html
http://www.communityrun.org/petitions/worldwide-rsd-crps-awareness-campaign-1
https://petitions.whitehouse.gov/petition/take-immediate-action-inform-medical-professionals-existence-rsdcrps-most-painful-incurable/SFkd2cS6
If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
RSDFighter@hotmail.co.uk or join me on facebook
Kevin