A Worthwhile Cause
CLICK HERE to read up on and donate to a very worthwhile cause!
"Thank you to our EDS Network CARES families & our EDS families from Canada which are also part of EDS Network CARES foundation.
We are finally able to get some positive and hopeful EDS research going. The last time EDS research was done, was back in 2004-2005. That's not good enough. This research needs to continue throughout the years to come. Research is an on going project and if we want to see progress continue for Ehlers-Danlos Syndrome we need to continue to support research by doing the same as we have been doing! Raising Money and doing Fundraisers!
Without your donations we wouldn't have this first time EDS hope. This has been a long time coming for all our EDS Families."
Nice Work!
Wow Perez thank you so much for putting this little video up. My whole life we could never figure out what is wrong with me and over this past year they are coming to the conclusion it is Ehlers Danlos. I sit here with two dislocated arms that they have no idea what to do because the surgeries haven't worked. It is very important that people are aware of this disease and that they do more research. So thank you very much!
Brittany
I was soo surprised to see this on your sight! Thank you for posting it, my mother was diagnosed with this in 2004. Hardly anyone knows what it is, but it is a very devastating and confusing disease that more people need to be aware of. I lost my aunt to it a few years ago also. Thank you again for posting, Perez, so we can get the word out there!!
Katherine
Thank you for posting this, Perez!! Not many people know about this disease. My mother was diagnosed with it in 2004. It's a scary thing that more people have and aren't aware of. The more people know about it, the better. Thank you again, Perez!
Katherine
This is the same condition Eric the Actor has…I knew someone who said her daughter had it. After the town raised thousands for her, she fucked off with the money then had a "miraculous" recovery.
My daughter and I both have EDS. My daughter has had hip surgery and ankle and elbow problems. Please support this research.
Thank you so much for posting this….my sister has this and is in extreme pain everyday at only 20 years old…its so rare they need donations desperately!
Wow! Imagine my surprise to see this. I almost died this summer due to ED and Marfans related complications. After 4 days in ICU and a month in the hospital I was finally diagnosed. Learning to live with the incurable condition is the hard part…thank you for posting this.
Thank you so much for posting this =] I was diagnosed when I was 17 and without funding for research, the outlook for me is pretty bleak =/ My joints are really, really loose and I'm starting to have problems with my internal organs. I have to take medication, just so that I can eat, and I'm allergic to all the good pain meds, so even after surgeries, there's nothing they can give me. This condition takes SO much from you. I'm a drummer/pianist who can't play anymore, an artist who can rarely finish a painting and a dancer who can't move without pain. But my situation is improving, thanks to research that's led to knew physiotherapy techniques and new ways of strapping and supporting joints to prevent injuries and allow me to build some decent muscle.
Even people who think they're perfectly healthy, like my parents, may well carry the genes for EDS and be able to pass on the full form to their kids. That means that anyone could have a child who has EDS.
That's why it's so hugely important for us to bring EDS out of Ripley's Believe It Or Not territory and into the medical mainstream.
Thank you SO much for posting this, I can't tell you how much it means to me that we have your support =]
Thank you for posting this. My 7year old son has Kyphoscoliosis EDS and has had a life of hospitals and surgery. Diagnosis, treatment and a cure are our top priority. Educating Dr's is the hardest part, because most have never heard of EDS. Jeremy (my son) just had his 3rd back surgery 2 days ago, to lengthen the rod in his spine that holds him straight. It's his 7th surgery so far. He will continue to have these every 6 months until he is grown. He tells me he really wants a cure for EDS and if we don't find it, he will!! No one should have to watch their child go through what he goes through on a daily basis. I know their are worse off people and children. That doesnt make it any easier when it's your child. He would love to play sports or ride a bike like his friends do. Thank you again for recognizing this terrible condition.
Re: matchstick – Sorry, but you can't have a recovery from EDS. There is NO treatment and NO cure at this point. But there IS hope on the horizon. We need more people to recognize this is a reall problem. 90% of the EDS cases go undiagnosed or are diagnosed post mortem. Many have it and don't even know.
Wow Perez, thank you for posting this video. I was diagnosed with three forms of Ehlers Danlos Syndrome twenty years ago when I was two. Because of my diagnosis my family also realized that many of their issues were related to the disorder as well. Awareness of this disease is so little compared to others and as it is often hard to tell from the outside that a person is "ill", many suffering do not get the understanding and the care we need. It can be extremely hard for kids to cope with cronic pain while other kids claim there is nothing wrong with them because they look "perfectly normal". I appreciate it Perez, really do.
I think this is falsely advertised, you cannot cure something that is genetically passed on, it's not a desease, it's a syndrom. I have EDS Type III and wasn't diagnosed till I was 20, and the biggest thing for my life is the awareness, and letting my doctors know I have it because it changes how I am diagnosed.
I believe they should raise money for families who have to pay for the medical expenses, but one CANNOT cure it, and saying that one is raising money for the cure is wrong.
Thank you so much Perez for helping to bring EDS education and awareness to your readers. Those of us who work tirelessly advocating on behalf of those with Ehlers Danlos Syndrome (EDS) thank you immensely!!!
Thank you SOOO MUCH for posting this Perez!! I have 2 types of EDS Hypermobility and Vascular…the latter being potentially fatal. THANK YOU for bringing this topic to the mainstream! You are helping save my life and the lives of countless others, the more people know, are edcuated, made aware and donate the better chance I have to live a full life! With all my heart I thank you and I hope you will randomly repost this to touch the millions of followers old and new who adore you!
Thanks you rock and p.s. you look amazing and your ass looked fabulous on the Victorious episode when you were laying over Tori's lap! LOL!!!
I just wanted to thank you Perez for posting this video!!! This disease is only rare because people (mostly doctors) are unaware of the symptoms. It is truly crazy how so many people probably have it but are misdiagnosed. My brother was one of the many that weren't diagnosed at all and he lost his life at the age of 14. Please keep spreading the word so that we can save the rest.
Perez what brought this pertcular condition to your attention? Just curious. This has left me house or wheelchair bound. I had had 3 massive strokes and a billion other problems. I'm am fighting so hard myself to teach docters. I'm am in medical libraries studying on the days I can move. I have never had a moment without pain since I was 12 years old. And with out insurance, like so many of us to fight with county care is soooo much harder. If have a few local friends and 2-3 hundred Face Book friend. With Ed
Goers
Perez what brought this pertcular condition to your attention? Just curious.
Im just 36 and this disease has left me house or wheelchair bound. I had had 3 massive strokes and a billion other problems. I'm am fighting so hard myself to teach docters. I'm am in medical libraries studying on the days I can move. I have never had a moment without pain since I was 12 years old. And with out insurance, like so many of us to fight with county care is soooo much harder. If have a few local friends and 2- 3 hundred Face Book friend. With Ehlers Danlos. And we are just a few left very mistreated and misunderstood most if the time. Most of us suffer is so many horrible ways. Docs just pass us off as crazy or don't know what to do so do nothing. It's a hard lonley painful and sometime deadly disease. And we NEED HELP. Thank you so much for trying to help.
Goers
I HAVE EDS Hypermobility Type and traits of classical! Last summer I was playing in a state tennis tournament in North Carolina. Now I am dislocation my wrist opening the refrigerator, picking up a gallon of milk, etc. I dislocate my shoulder picking up a bag of groceries. I am 24. This is not okay. I always knew I was different, I had 9 vertebrae fused at 15. Thank you so much for raising awareness about this, there needs to be more research and earlier diagnosis so we do not go for years wondering why we are the way we are. I am finally making peace with myself. Thank you for your post! Anyone else on here with EDS please contact me, I am newly diagnosed and I want to find others that live close to me, its so rare to find anyone!
Best post on the site!
Perez, I am purely thankful to you for posting this! EDS is rare, and rarely heard of, even by doctors…..and for you to give it this much publicity is amazing! I'm 16 and walk with a cane, soon to be in a wheelchair because of how often I dislocate my hip, and it comes out of socket with any slight movement. I don't let it define what I can and cannot do….I won't let it destroy my life because I will always do the most I can, and this research means so much to me, and so much to my community of EDSers, and will help encourage us in our down days of feeling like the cause is hopeless….THANK YOU.
This is great that you posted this, so much so that I almost cried when I saw that YOU, who has a lot of power in the public eye, has posted something supporting Ehlers Danlos Research. THANK YOU SO MUCH, you're doiing us all a great service getting awareness out there, and rsearch a boost! Thank you. 
ツ
-Katlyn Constance W.
Re: IHaveEDS –
I agree with you, there will not be a cure….but there are possibilities for understanding EDS enough to make even more advancements in life quality, even better splints & braces, more preservation of joints, and maybe a way to build up STRONG collagen.
Perez thank you so much for bringing attention to EDS!!!! For those of us who suffer from this in it's various forms, it is a huge leap that YOU would find our cause important enough to put it on your web site !!! If enough attention were brought to this we might not have to suffer going to doctor after doctor who know nothing about us. To the medical profession we are but one small chapter in a book. They call us rare, I'm not sure if we are so rare or if we go undiagnosed for lack of understanding and research. Again I thank you for myself and my children who are also affected for a ray of hope !!!!
Thank you Perez for showing your support for EDS this means a lot to us… I have been suffering from this since I was in Elementary School, had to have knee surgery on both of my knees when I was just 10 yr old… cause they kept dislocating.. still have trouble with them… We need to find a cure for this,, many are dying from this.. and becoming very un mobile…I really appreciate you helping us spread awareness…
Lori
Thank you very much for this post Perez
I am 18 and I have Ehlers Danlos Syndrome for now 10 years and it's hard to live with the pain and tiredness everyday, whithout knowing if I will be able to walk tomorrow. I am writing that and at the same moment my collarbone just dislocated, and that's the same thing at every time.
I hope that EDS will have more donation for more research, because we really need it !
Thank you very much again !
xoxox
Perla from France