Thank you for the Welcome and this site has been long needed! Congrats to you for finding the need and taking initiative (the follow through: to fill the need) by connecting so many of us together through the use of IT. Information Technology gets such a bad reputation as being unhealthy for our bodies, yet we all need support, both healthy and unhealthy, but it's sometimes harder for those of us keep living with our invisible (many times inconvenient and sometimes crumbling) pain episodes to keep in touch one on one with family or close friends. Unfortunately, sometimes even those whom love us are worn out too by being our caregivers and are almost afraid to admit they need a break too! Thanks for allowing (also a brilliant idea I might add) to have those whom want to learn and educate themselves from our point of view! Although, it may only be aquated to a single star in our own Galaxy of daily living with this illness at least it's a light in the darkness and can acknowledge for ourselves we are not alone...if we just speak up or just listen to others...nor were we ever!
Hi Ade - I just posted some questions for discussion. I love the design of your website - it was well thought through!
I was wondering - did you attend last year's NIH, 2-day meeting around SC & engaging the community, or view the webcast? If not, here are links; these were excellent in my opinion, much better than the FDA community engagement meeting (held in 2014 I believe).
I have two questions around the NIH webcast:
- Would you be willing to publish the links on your website?
- Why do you think turnout was so low? I recall that last time I looked, for one day there were only about 350 people that had tuned into the webcast (I assume this was at the time of the event and does not count 'replays').
thanks I really appreciate that... i have suffered for so long without anyone to talk to about the pain i go through, it's really comforting to have some one who understands the frustration that comes along with this decease.
Hope all is well with you and yo are pain free!!!!
My husband and I just posted on Youtube a video of our son, who has SS and is a very active little one.He just turned 4years old on the beginning of August. In this video he is doing one of his hobbies - he likes to conduct! Also he plays violin, does karate, and math/reading at Kumon. He is for sure a busy little buddy. And he enjoy all his activities.
We would appreciate your support, please check it out and feel free to give us your feedback and forward it.
Break the code foundation is a support group in Nigeria whose mission is to get through a legislation to protect people living with sickle cell from discrimination in the work force, schools and society at large. Can they be helped. I hope you are much better now.