Hi Everyone,
I just found out I will be going to NIH in January. I am quite excited and nervous to go! Just wanted to let you know 
Kari
Dear Kari,
That is wonderful about NIH…I will be waiting to hear how it goes.
Take care. Robin
Congradulations!! I am happy that you are going.
Gina
Hi, kitkat.
I’m a lurker on the FMD board and had a question for you.
I applied to the NIH study back in July and got an email saying I had been accepted and someone would contact me to schedule, but nobody has contacted me since. I’ve sent emails to Benjamin Griswold (who told me I got in) and called him. But I haven’t heard back from him.
I was wondering if you knew who’s doing the scheduling. I’m really anxious to get there.
Thanks, and congratulations.
Kadi
Just learned last week that I also will be going to the NIH study in January. Am a bit anxious. Also sent in blood for DNA testing in July. They are now just scheduling for 2008. You might hear soon.
ADH
Hi Kat,okay not sure if I gave you info…but here it goes
- Wear sweats (with no metal) easy to take on and off…also take slippers as easy also.
- They give you food coupon, ample amount. Tip…when buying your lunch make sure to buy extra drinks etc. for snack time later.
- There are computers by front desk for when you have breaks,which is not often.
- Make sure you get name of the hotel which offers the NIH discount. When booking, confirm you will get discount. I had to talk to a manager as other staff had no idea of what I was talking about.
If you are flying in, the Hotel they suggest is not far from the hospital. There is a shuttle from and to airport, but as far as getting to Harbor Hospital you will need to take cab. Also if your hubby is going with you, you don’t have to spend night at hospital. Most folks did, but I did not. Just let them know ahead of time.
Any questions just ask.
For those of you who have not heard back yet, trust me , return phone calls etc are not their strengths. So just be persistent. I think they are overworked and understaffed.
Take care…oxoxoxomimi
Congrats Kat and all who are going to the study. As a Mom of a child with FMD I am so greateful to all of you who are able to contribute to this. Your courage means the world to everyone! The kids with FMD can’t be a part of this study so your doing this for them too.
You’ll hear from a lot of people who went to the study that the lines of communication are really, really, really, slow. Be patient and keep in mind that this study is looking at more then one group, not just FMD patients, so the number of people they need to organize is huge. I’ve been to Harbor Hospital, I’ve meet Naz McDonnell and the staff, its just a few people in charge of coordinating this and they are seriously out numbered by the people participating. They will get to you.
Your best bet is to put a note on your calender at the beginning of every other month remindng yourself to drop them an email asking for an update on your scheduling. Ask how far out they are scheduling . . . a few months? A year? I really don’t know of anyone who was accepted that never got a follow up to be scheduled but it did take a long time.
Also, try not to be too nervous about things, the staff is great and they’ll do all the can to make you feel comfortable and calm. Hang in there.
Hi All, like Susan says it is a big study and as most goverment projects go, a bit slow. Currently they are busy putting together some findings etc., so they have not forgot you …just focusing on the scientific part.
Take care…oxoxoxomimi
When you buy snacks at mealtime for later you can put them in the fridge near your room. They will put your name on it for later. I bought yogurt for breakfast for the next morning as I am not a big breakfast eater. I also bought juice and other items for in between but didn’t end up eating it all. Nazli keeps you busy and the few days you have there go quickly.
It does take a while to get a reply from them so if you don’t hear back you can email them again OR call your contact person.
Good luck and if you have any other questions you can call me direct.
Beth
I took a shuttle to and from the hospital. I was able to pick up the shuttle right at the hospital and go to NIH. The shuttle is MUCH cheaper than using a taxi. If they tell you that they don’t go to NIH tell them that MANY MANY others before you have used their service to get to NIH. you need to schedule this about a month prior to going to NIH not earlier because they don’t book that far in advanced.
If you need help with air fair contact Wings of Mercy. They are a great organization and fly people that need to get to Medical treatment or care. If the large air ports are flying they are too as these small planes that the the pilots use are equipped to handle snow. Once you qualify you are able to use them again for a year without having to do all the qualifying medical paperwork again. They have a large sliding scale and understand that sick people use up a lot of their income for medical treatment. I didn’t think I would qualify but did and wouldn’t have been able to get there otherwise.
There are a few hotels that give a discount I believe but book up early. If you just need to stay one more night to get a flight back out of Baltimore ask Nazli or whoever you talk to if you can stay and extra night at the hospital. They were happy to let me do this because they had room on the floor for an extra body.
If you have any other questions feel free to contact me direct. I would be happy to answer any questions you have or talk to you on the phone directly.
beth
Also take a dozen or so one dollar bills to tip the shuttle driver, or anyone that helps you. If you need someone to help you carry bags at the airport they will do this for you. If you need someone to help you carry bags to the NIH floor you can tip them also. Many of us with EDS and FMD need help physically to get to where we need to go and there are plenty of people around to help you do just that. Relax and take in what you can. You will be given a lot of information in a very short time and sometimes it can be overwhelming. I went to NIH with EDS and came home knowing that I also had FMD. My room mate went to NIH knowing that she had FMD and came home knowing that she also had EDS. Neither one of us knew about the other disorder beforehand. It was a very strange coincidence but its common to have more than one connective tissue disorder. Nazli is a very kind compassionate doctor and you will love her. She is like our Dr. House but much, much, much nicer to say the least. She doesn’t have an arrogant bone in her body even though she has the right to be. She is brilliant.
Hello to all of you! I am in the process of making travel plans for my January visit to NIH. All of your shared experience and suggestions are apreciated. This web page has been a primary sourse of support for me in navigating through my diagnosis of FMD.
Thanks, ADK