Hi everyone!
I was diagnosed with Type 1 3 weeks ago. Apparently, just at the right time because Eastern Virginia Medical School is doing a research study for those recently diagnosed with Type 1 (16 weeks and under) ages 18-30 with a BMI unde 30. My doctor asked me to consider participating and so far I am the only one from my area able to participate…
The study is by Osiris Theraputics with a drug called Prochymal… It uses adult bone marrow donor stem cells to try and supress the autoimmune reaction in type 1’s while restoring damage to the pancreas and preserving the remaining islet cells. There is a 1 out of 3 chance that i could be recieving a placebo tho… The study lasts for 2 years.
There are only 60 people in the whole country that are participating in this study and I was wondering if anyone else is doing this study as well or knew anything about it!
Hopefully nothing bad happens… the drug is definitly in a research stage… no long term effects are known. However, I feel that I am priviledged to take part in the study and hopefully help those who have been suffering from Type 1 much much longer than I have.
i actually just went in for the beginning stages of that trial. they have to see if i have a certain antibody to qualify. hopefully i will know tomorrow and then i go in for the meal test. the way i look at it is this disease has turned my life upside down in the past 2 months and im ready to do anything i can to try to fix it. and its not a bone marrow transplant. they take the stem cells out of a adult doner and then they infuse them iv style into you. let me know if u decide to do it.
I already signed the contract, but i have to make an appointment for the screening part! Apparently other people with like Crohns and stuff have said its made them feel better already… I just think it would suck to go through 2 years thinking your getting a miracle drug and end up being the placebo!!
I was dignosed in 1987 and went into a nationwide study in 1989 (DCCT). The study began in '83 and ran to '93, When it was complete, they started another study (EDIC) with all of the DCCT participants (1,444 of us). EDIC ran from '94 to '06. Another extension of the sudy was granted in '06 and we’ll being going until 2016 (so far).
DCCT/EDIC involved investigation of keeping blood sugars as close to normal to see if it would cut down on complications. I guess it sets the standard for a diabetics now. I orginally went to N.Y. hospital/ Cornell Medical center in Manhattan. I moved to Florida and started EDIC with Univ. of Southern Florida in Tampa. Now that I live in Virginia Beach (I’ve been here for 11 years), I go to Univ. of Maryland Medical Center. I couldn’t imagine life without the study as far as information, knowledge etc…(Not to mention free Insulin, test strips, syringes. Now I use a pump so I have boxes and boxes of syringes).
They actually began a “study on the study”. Other studies were trying to pinpoint why DCCT/EDIC retained 96% of their participants over the course of 26 years.
Your study is quite different than what I’ve been involved in, as our groups were Control-standard diabetes care (test your blood sugar 2-3 times a day, 2 injections a day and Experimental- intensive therapy, multiple tests/injections. Obviously the experimental group proved better than standard care.
I learned a lot as the result of my study and I’m sure you will too. The participants in DCCT/EDIC have been told “You folks made medical history”. You can do that too with your study.
I guess my study was in unchartered waters at the time. Now it’s “a way of life”. I’ve gone to diabetes symposiums etc… and was applauded and thanked by people as they left the room when they learned I was in DCCT/EDIC. A feeling I never experienced before in my life.
I wish you all the best. I’m sure you’ll be proud to be involved in what could be a groundbreaking study!
Maybe I’ll see you around V.B.
yes that is amazing! Actually, My endocronologist referred to that study you were in at my last appointment! Thats so cool! I have my screening on Monday to see if I have enough insulin producing cells left to be apart of the study. They can only use people recently diagnosed with type 1 because they have the best chance of having some cells left to protect. Basically, the drug is suppose to preserve the “beta cells” and hopefully restore the damaged tissue of my pancreas while suppressing the autoimmune reaction that Type 1’s have. Im kind of nervous… I think I might be kind of depressed if I find out im not eligable because it means that i dont have enough cells to preserve… its kind of like the nail in the coffin. Im also nervous that I might be the placebo group too… I would hate to go 2 years and find out that nothing has been accomplished.
Anyways, EVMS has been GREEAT!! The researchers lined me up with a one on one session with a Diabetes educator because most people in the group sessions are type 2s. Then SHE lined me up with an EVMS nutritionist. The researcher even came in to say hi when I was in my appointment with the diabetes educator. They are all so nice and actually CARE about what im going through. I think they are really excited to see if they can begin the study…seeing as, so far, Im the only one in Hampton Roads that contacted them…lol
I think being in any kind of study involves some nervousness (a lot at times). I’ve had tests with EDIC that I would never undergo with normal doctor visits pertaining to my diabetes. EDIC did a corotid ultrasound (to ensure the corotids are not clogged etc…). Your first thought is : “Holy crap, I wonder what they’ll see” which is an expected response. I don’t know, I guess if I never went through it, I wouldn’t have worried about it. The other one they did 2 years ago was a cardiac MRI. All was fine with both tests which was a great feeling. I mean, these tests weren’t performed because there was a potential problem but, concern still creeps in your head.
I’ve done well with my diabetes and have averaged 6.0 A1c’s for the past 4-5 years. So far, so good.
Sarah,
Is your diabetes covered under an insurance plan or, are you “out of pocket”? I don’t mean to get personal. You said, you’re a student and working as a server 9If I remember correctly?). I was just curious…
Hang tight and keep a positive thought. Hopefully, before you know it, you’ll be in the study.
