would i be aloud to

[willie2530]

my wife has started a petition to get help for hypermobility syndrome sufferers the help that they deserve.would i be able to put the link in the page thats all about me.would ebid mind.as she has got it on facebook aswell.as they group are going to contact tv

[buttons-and-bows]

Sorry I don't really know but I would think it would be okay......... what is it exactly, I am sure other people would like to know too.

[willie2530]

this is how one of her group members feel.
Dear family/Friends,



I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.



I am angry. HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you.



Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.



Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible treatment out there, I will know about it.



Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind.



I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

[suesjools]

Wow, that is really moving and heartbreaking at the same time. I don't see why this would be a problem at all, though you might want to contact support to give them a heads up first.

Bravo to your wife for her good work, we need more like her in this world.

Best wishes for many sales to all,

[willie2530]

i was thinking instead of putting address the peolpe that are signing from here would just put ebid.with there real name of coarse.

[willie2530]

http://www.facebook.com/l.php?u=http...dRCi26&h=a7a1e

[buttons-and-bows]

http://www.facebook.com/l.php?u=http...dRCi26&h=a7a1e

Just signed the petition

[willie2530]

thankyou it means alot