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Served on a Dept of Defense IC Research Panel!

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  • Served on a Dept of Defense IC Research Panel!

    AIBS Research Panel Selection

    I'm thrilled to share some "Inside the ICN" good news. Last July, I was contacted by the American Institute of Biologic Sciences to ask if I would be interested in serving on a peer review panel for IC research for the 2011 fiscal year. My answer, of course, was "Yes! How can I help?" I'll confess that I was very excited to be given the opportunity to participate. I completed an extensive application and found out two weeks later that I had been selected as the sole patient representative. While it was a tremendous honor, It was also an eye opening journey into the heart and soul of how research studies are selected.

    The Department of Defense (DoD) Peer Reviewed Medical Research Program for Fiscal Year 2011 allocates $50,000,000 per year for the study of various medical conditions relevent to military readiness. Because interstitial cystitis is being diagnosed at somewhat alarming rates in returning veterans from Iraq and Afghanistan, research into new diagnostic methods and treatments are a high priority along with, of course, several other conditions such as chronic migraine and post traumatic headache, drug abuse, dystonia, epilepsy, inflammatory bowel disease, neuroblastoma and others.

    The IC committee consisted of six members, two physicians, three PhD researchers and myself. I had about three weeks to review eleven 100+ page research applications which I gave various scores too. In mid September, the committee as a whole met to review our scores and generate a summary. Our recommendations are then given to the final committee of military representatives who make the actual allocations. While the other reviewers were assigned three studies, I had to review ALL elevent and provide comments about their impact on the IC patient community. I was then required to defend my position and scores. Not easy mind you when you're working with world class researchers and physicians. The committee meeting was alternately tense, invigorating, intimidating and inspiring.

    The eleven studies were diverse, fascinating and, sadly, I can't talk about them due to a confidentiality agreement. What I will say is that the IC research movement is moving quickly and with great promise. I'd like to thank the staff at AIBS and my fellow committee members for the honor of participating this year. It was my privilege to participate.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    Wow, Jill!

    That is very impressive! What a tremendous honor, especially that they placed you at the head of this, even over DRs and research scientists! Of course, since you were the only one who actually HAS IC, and since you are also the founder of this very successful and infomative website, then you really would seem to be the obvious choice! But, still, that had to be very thrilling for you! I cant wait until the information finally comes public (Someday, maybe?) I would love to see everyone's thougts on this and to see how much the allocated to study this bizzare angle. (I mean seriously, who would have ever thought the DoD would give us a thought!) However, I gotta say if there was a way for our enemies to "give someone IC" then, it would do more damage than anyone besides us could ever even realize!)

    By the way.....I recently heard that 1 in every 5 women have IC! If that is true, then think about what a phenomenal amout of people out there who are suffering! Anyway, what an honor for them to ask you to serve on that panel!


    Again, I am so very proud of you!

    Hugs,

    Amaranthe
    I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

    D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

    Meds: Estrogel (due to total Hyster)
    The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


    (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


    John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

    Comment


    • #3
      Way to go!

      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        How sad that it takes such an increase of those affected with IC to see more research available, but how comforting that there is hope for more effective treatment and possibly a cure someday!

        It's such a blessing to know that you, being truly dedicated and compassionate, were part of this elite group to help good things happen.

        Thank you over and over, Jill.
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

        Comment


        • #5
          That is fantastic Jill! On behalf of all of us with IC, thank you!

          I thought your comment on veterans returning from Iraq and Afghanistan are experiencing IC at an alarming rate quite fascinating. Any thoughts on why this might be happening? Is it somehow stress related or is it environmental?

          Thanks again for all of your hard work!

          Suzi

          Comment


          • #6
            You never cess to amaze me with everything you find the time to do. An honor yes, but this site alone must take up a lot of your time.

            I am sure everone here and everyone with IC that has moved on from this site really appreciates all you do for the cause, building awareness, helpping people through the maze of IC, and advocating for research.

            Especially when you think about your daily life you have the IC things to deal with too.

            Thank you for all your time and effort.

            MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #7
              I'm thankful I just read all of that. Of course, I can see why you could not say anymore than you did. Regardless, I know that you do more than I am usually aware of. It's all good. I was not aware we have got military personnel returning with IC. (hmmm) Why? I know we don't have a cause, but I can tell it seems like every patient did not get IC the exact same way. Besides, I would figure the ones that came back with it did not complain before hand. Otherwise, IC could keep somebody from deploying. (which I was in the Red Sea during Desert Storm back in 1991)(and considered a war veteran) Of course, I had never heard of IC until being diagnosed in September of 1997. Yep! Maybe we will get to find out more about it at some point. OK. Smile!...God loves you.

              Comment


              • #8
                This is very scary. I'd hate to think my husband gave this to me.

                Comment


                • #9
                  I don't think I have ever read anywhere IC is contagious
                  My are with you all. May you all find a way to peace and joy in your lives.

                  Comment


                  • #10
                    Well, he doesn't have IC, but I was thinking he could be carrier.

                    Comment


                    • #11
                      Originally posted by vanilla View Post
                      Well, he doesn't have IC, but I was thinking he could be carrier.
                      I have had IC for over 35 years and I have never heard of it being contagious either.

                      Congratulations Jill! Great honor and well deserved!
                      Jolene

                      "Life is what happens when you are making other plans" John Lennon

                      IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                      Information for Patients can be found here.
                      http://www.ic-network.com/patientlinks.html


                      Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                      Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                      "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

                      Comment


                      • #12
                        That vets are getting IC is very alarming. It bears the questions of if environment can trigger it..
                        • 27 year old student
                        • Had symptoms since I was 5
                        • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                        • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                        • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                        • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                        Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                        What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                        What didn't work: Elavil, vistaril (12/22)

                        Comment


                        • #13
                          Originally posted by dyno View Post
                          I have had IC for over 35 years and I have never heard of it being contagious either.

                          Congratulations Jill! Great honor and well deserved!
                          I lol'd.

                          This may sound horrible, but if IC WAS contagious just imagine the research funds that'd be streaming in. Just pass it on to some politician and.. boom.
                          • 27 year old student
                          • Had symptoms since I was 5
                          • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                          • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                          • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                          • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                          Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                          What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                          What didn't work: Elavil, vistaril (12/22)

                          Comment


                          • #14
                            LOL Nekura!!!! Boom is right! It was an honor to do so.

                            I would like to clarify that I was NOT the chairperson of the committee.

                            Hugs to all!

                            Jill
                            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                            Comment

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