LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » interstitial cystitis intl. study, BOSTON, ID genetic markers

 - UBBFriend: Email this page to someone!    
Author Topic: interstitial cystitis intl. study, BOSTON, ID genetic markers
bettyg
Unregistered


Icon 4 posted            Edit/Delete Post   Reply With Quote 
http://www.immunesupport.com/library/showarticle.cfm?id=7773&T=CFIDS_FM


Interstitial Cystitis Study at Boston Children's Hospital Recruiting to Identify Genetic Markers


by Editor
ImmuneSupport.com

02-25-2007


About every 15 seconds a person in the U.S. is diagnosed with interstitial cystitis (IC) - a painful pelvic/urinary tract condition that is also frequently associated with Fibromyalgia, ME/CFS, and IBS.

``Studies have suggested that the condition may be genetic and passed down (or inherited) from one generation to the next,'' researchers at Boston Children's Hospital note.

And now they're recruiting IC patients - with a special emphasis on including younger patients age 8 and up - to ``compare different families' samples and medical information and determine which genetic factors may play a role in interstitial cystitis.''


One requirement for inclusion will be that the patient have a ``first degree relative'' (parent, brother/sister, or child) with IC symptoms.


What is Interstitial Cystitis and How Frequent is It in FM and ME/CFS?

Interstitial cystitis is a condition with no known cure. Symptoms tend to be as outlined in the ``Inclusion Criteria'' below.

It is common in both men and women, and frequently goes undiagnosed, owing partly to a lack of medical training in IC-related diagnosis/treatment training, and to a lack of public awareness.


Additionally, interstitial cystitis goes by several other names:


Painful bladder syndrome,
Hypersensitive bladder syndrome,
Chronic pelvic pain syndrome.
According to recent journal articles, ``24.6 percent of IC patients exhibit symptoms of Fibromyalgia, compared with 3.2% of the general population,'' and there is a theory that ``IC might be a disease within the spectrum of chronic fatigue and pain syndromes.''


The Boston Childrens' Hospital project - ``Genetic Studies in Interstitial Cystitis'' - ClinicalTrials.gov number NCT00389142 - intends to ``fully describe the phenotype of interstitial cystitis.''


[A pheonotype is the pattern of genes that together manifest a trait that varies between individuals.] The study will recruit a group of patients in the United States and reportedly another in Bulgaria.


Criteria for Inclusion :

Males and females ages 8 and older

Urinary frequency - more than 1 time per hour, and/or

Dysuria (painful or difficult urination), and/or
Pelvic, suprapubic, or abdominal pain - for 3 months or longer

Previously normal voiding pattern (normal retrograde voiding cystourethrogram if done).


A cystourethrogram is an examination of the bladder and lower urinary tract using a special form of X-ray called ``fluoroscopy'' and a contrast medium.

Nocturia (need to get up in the night to urinate)

Normal urinary stream (by history)

No evidence of active bacterial urinary tract infection (no pyuria, & negative urinary culture for last 3 months)

Must be first degree relative of someone with above symptoms.

Exclusion Criteria:
*****************

Major structural/anatomical urinary tract abnormalities by ultrasound

Underlying inborn conditions

Severe constipation.


Location and Contact Information:
**********************************

Children's Hospital, Boston, Massachusetts
Program in Genomics/Harvard Neuromuscular Disease Project

Jordan Dimitrakov, MD, PhD, Principal Investigator


Please refer to study by ClinicalTrials.gov number NCT00389142

Contact Elicia Estrella, MS, CGC.
Phone 617-919-4552.
E-mail [email protected]

Health Authority: U.S. Institutional Review Board

IP: Logged | Report this post to a Moderator
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165

Icon 1 posted      Profile for cantgiveupyet     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Betty for posting this :-)


"About every 15 seconds a person in the U.S. is diagnosed with interstitial cystitis (IC)"

I didnt realize there were that many with IC.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

Posts: 3156 | From Lyme limbo | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165

Icon 1 posted      Profile for cantgiveupyet     Send New Private Message       Edit/Delete Post   Reply With Quote 
I contacted the Study administrator and family members do not have to be symptomatic. They are just looking to see if they can isolate a specific protein found in the urine of IC patients.


I'm thinking about doing this and hope atleast one of my family members will join me :-)

If I can save anyone from having the horrid hysto/cysto to confirm IC diagnosis, it will be worth it.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

Posts: 3156 | From Lyme limbo | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Interesting. I think it has a bacterial cause. But I guess we're all genetically predisposed to one thing or another.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95968 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lioness
LymeNet Contributor
Member # 10655

Icon 1 posted      Profile for Lioness     Send New Private Message       Edit/Delete Post   Reply With Quote 
Interesting...maybe I will take part and get my mother to also.
Posts: 240 | From MA | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
when i read this in celiac newsletter from scott, i thought of many of you who have discussed this here ... so wanted anyone interested be able to apply IF they chose to. [Wink]
IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.