babettess Posted June 29, 2010 Report Share Posted June 29, 2010 I am excited to be going to the EDs conference. I have been researching EDs and If it could cause my swallowing difficulties and have definitely found a connection. Since the swallowing problem is one of my worst problems, I am really hoping that issues such as mine will be addressed sometime during the conference. Guess I will have to wait and see!I'm wondering two things:Is anybody else going to be at the conference? For those with swallowing problems-how many of you have EDS? ( I know. Two totally unrelated questions in one post. I'm trying to be efficient and save keystrokes at the moment..)Looking forward to possibly meeting some of you in Baltimore!!Babette Quote Link to comment Share on other sites More sharing options...
issie Posted June 29, 2010 Report Share Posted June 29, 2010 Yes, I do too. I thought it may be related to a tumor on my thyroid, but the doctors didn't seem to think so. Please, please tell us all about the conference when you get back. Even if you just PM it to me. Finding help for two very complex issues is so important. Wish I could go. Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 29, 2010 Report Share Posted June 29, 2010 We're looking forward to it, and hoping for tolerable weather. We would like to see the aquarium, and possibly DC. We are leaving on the 13th, and I have an appointment with a neurosurgeon who will be speaking at the conference on the 14th. We are staying at the hotel where the conference is held.http://www.marriott.com/hotels/travel/bwis...mp;app=resvlinkEDNF members are getting a great room rate, as I know this hotel is very expensive. We will be staying at the hotel for 5 nights. The doctor I'll be seeing is in Bethesda, MD. Hopefully we can find a decent route that won't be too much of a white knuckle drive. For me it's really hard because my spine is so unstable.Let's all pray we're feeling decent enough to enjoy this conference.Maxine :0) Quote Link to comment Share on other sites More sharing options...
issie Posted June 29, 2010 Report Share Posted June 29, 2010 Maxine,I'd love to hear your take on the conference too. I hope the neurosurgeon has a good answer for you. Please let me know how you like him. At some point in my life I'll need one, because I have a brain tumor on top of all this. With the EDS, I always feel like I'm crunching into myself. I tell my husband that all the time. Tell me about the EDNF organization. How do you join it? Quote Link to comment Share on other sites More sharing options...
babettess Posted June 29, 2010 Author Report Share Posted June 29, 2010 Maxine,I am staying at the same hotel. I am arriving at the motel on Thursday and attending the conference on Friday only. I will PM you. Perhaps we could meet? Good luick finding an easy route. I'm a Maryland Country Girl so I'm not much help when it comes to the city. Issie- to join the EDNF go to www.ednf.org They put out a newsletter and have very good information for individuals and physicians..I will give an update after the conference. I am so excited to hear what the top EDS professionals have to say.Babette Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted June 29, 2010 Report Share Posted June 29, 2010 I'm going as well, and speaking there too. Come see me Friday 4-5pm (Unique Perspectives in Ehlers-Danlos) I'll be staying at the same hotel too, and will be running the kids/teens program. Can't wait to see/ meet all of you!!Sara Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 30, 2010 Report Share Posted June 30, 2010 I'll be looking forward to meeting you too Babette & Sarah!Issie------I'll be seeing Dr. Henderson, and I've read his Bio, and it looks pretty impressive.I've also seen Dr. McDonnell when I atttended the EDS study in 2008. I'll be going two more times in the future.Dr. Tinkle is my EDS geneticist, and I see him for regular check ups. All of these doctors will be speaking at the conference also.Sara, that's great that you're working with teens, and that you're running the kids/teen program-----I know this must take a lot of energy, and I know it's limited with us. That is so great to see people like you who give so much of themselves. I wish I could help at the conference, but I'm going through such a rough time right now, that I barely have energy to run small errands. I used to co-lead a support group for dysautonomia several years ago, and took flyers for years to Dr. Grubb's office with this website on the flyers. I live about a half mile from his office. I've met many dysautonomia patients since late 2001, and have sat with many of them before their appointments, or often met with them after. Some have even stayed at my house.....I used to enjoy making them a good breakfast or meal depending when they were at my house. I remember one couple that drove all the way from Washington state. I met people from Canada, NY, SC, Washington state, MI., Iowa, Southern Ohio, Cleveland Oh., Penn., and I'm sure a few other states I forgot. I know Dizzygirl enjoys my brownies----lol. I remember a whole family from southern Ohio came over-------they were such a nice family! It has been quite a journey, and there were good times also! Maxine :0) I'll be looking for your PM Babette. Quote Link to comment Share on other sites More sharing options...
sugartwin Posted June 30, 2010 Report Share Posted June 30, 2010 I'll be there as well! I think we should all meet up. I'll be staying at the same hotel too. I know the ring splint people will be there, and I'm looking forward to being sized. I can't wait to hear all the information that will be presented.Maxine, I've heard lots of good things about Dr Henderson. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted June 30, 2010 Report Share Posted June 30, 2010 Thanks Sugartwin for letting me know that the ring splint people are going to be there. I seriously need to be fitted in my thumbs and first fingers (and ring fingers)!! :-) They should do toe splints too- sick and tired of my middle left toe dislocating....Maxine- You have no idea how scared I am that I might not be able to do all that they want of me. It's one thing to plan out everything on a computer with my feet up - it's quite another to be actually up and doing things. Hopefully the kids will be nice to me. I am bringing my friend Matt with me. He's done teen programing before and doesn't have either EDS or POTS so hopefully he'll be able to take care of me AND the kids if I crash -- which I really hope doesn't happen. I'm presenting form 4 to 5 on Friday to the adults, and I definitely plan to discuss POTS in my presentation. I've made them get me a chair for my presentation in case I need it and plan to be pushing fluids, salt and Sudafed (which works for me but makes most uber tachy) to hopefully get me through the two days. I wanna try to aquatics classes offered, but think I might only try it on Saturday evening- that way all I'll need to do is get on a bus and GO HOME! Sara Quote Link to comment Share on other sites More sharing options...
issie Posted June 30, 2010 Report Share Posted June 30, 2010 Alright, NOW I'm really jealous. Everyone there on the east coast with POTS and EDS are getting to go. Us out here in the west are struck with envy. You guys be sure and fill me in okay. Glad you're getting to go, hope you can help us find some answers. Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 30, 2010 Report Share Posted June 30, 2010 I'll be sying a little prayer for you when you're up there speaking Sara. POTS it rough, and certainly adds lots more disabling symptoms.Sugartwin, Sara, and Babatte -----let's all keep in touch. I know you're on facebook Sugartwin------- I think you have my ph# already. I'll give my phone numer to the rest of you, and we'll meet somewhere in the Hotel.I'm praying to stay somewhat stable so I don't have any problems with traveling ect.Maxine :0) Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 30, 2010 Report Share Posted June 30, 2010 I'll be saying a little prayer for you when you're up there speaking Sara. POTS it rough, and certainly adds lots more disabling symptoms. You're doing a great thing helping those kids. Just do what you can-----I'm glad your friend Matt is helping you. Sugartwin, Sara, and Babatte -----let's all keep in touch. I know you're on facebook Sugartwin------- I think you have my ph# already. I'll give my phone numer to the rest of you, and we'll meet somewhere in the Hotel.I'm praying to stay somewhat stable so I don't have any problems with traveling ect.Maxine :0) Quote Link to comment Share on other sites More sharing options...
Crow Posted June 30, 2010 Report Share Posted June 30, 2010 I had intended to but they have banned me from their message boards. I guess they don't like it when members ask too many questions. So I have cancelled my reservations. Makes me sad. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted June 30, 2010 Report Share Posted June 30, 2010 I had intended to but they have banned me from their message boards. I guess they don't like it when members ask too many questions. So I have cancelled my reservations. Makes me sad.Crow- the message boards are notoriously picky. Half the time I'm banned from them as well or I can't post or something strange like that. I don't think it has anything to do with you! Sometimes if you don't pay your dues on time, they block access to the boards - which I think is really dumb. I would rather get a notice in the mail saying I need to pay than have my access to the community cut off. I'll mention this to a couple people at the conference and see what we can do about that - it's awfully alienating for them to do it without warning...Maxine et al, I am on facebook too. Search for sara strecker in CT and you should find me. Sara Quote Link to comment Share on other sites More sharing options...
Crow Posted June 30, 2010 Report Share Posted June 30, 2010 I had intended to but they have banned me from their message boards. I guess they don't like it when members ask too many questions. So I have cancelled my reservations. Makes me sad.Crow- the message boards are notoriously picky. Half the time I'm banned from them as well or I can't post or something strange like that. I don't think it has anything to do with you! Sometimes if you don't pay your dues on time, they block access to the boards - which I think is really dumb. I would rather get a notice in the mail saying I need to pay than have my access to the community cut off. I'll mention this to a couple people at the conference and see what we can do about that - it's awfully alienating for them to do it without warning...Maxine et al, I am on facebook too. Search for sara strecker in CT and you should find me. SaraNo, it's not a technical issue. I don't want to discuss it any further on this board - too off topic.I hope everyone has fun at the conference. Quote Link to comment Share on other sites More sharing options...
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