Cowden Syndrome is a rare autosomal dominant inherited disorder characterized by multiple tumor-like growths called hamartomas and an increased risk of certain forms of cancer.
I went to Memphis last year and visited Elvis' house. It was very interesting. We also went through Arkansas. We spent 50 days in USA and I got heaps of photos of nearly all your famous icons. Great fun!
I'm so glad you figured it out! I'll go to the site as soon as I finish up catching up email. Wasn't able to be on here yesterday. My husband went to Memphis and left me with both kids and they were somewhat hyper.
Found the site have posted a message. It was my fault. I was putting an extra s in the site name. Lesley
Sure. It is www.cowdensyndromesupport.com I'm hoping it shows up on here since some boards are flukey with what they allow. Hope to see you there.
I would prefer to have a specific web site to go to and vent--there is not alot of activity on facebook and there are a lot of posts that are not in English--I can't read a foreign language--unfortunately. Please tell me the e address of your website.
Didn't realize there were groups on Facebook. I wish I hadn't created that site now. $25 down the drain and that's kinda hard since I'm on SSI but anyway my intentions were good. Cleveland is where I wanted to go but with our income it isn't possible. I rely on Arkansas Medicaid for insurance because my dad let his lapse on me in 1986 when I was 9 and it was the beginning of the end for me in being able to be insured. I live in another A state. Arkansas. Betcha we both have accents :) Nice meeting you Karen. If you guys would rather have a site than a group on facebook that one is open. I would even turn it over to someone else (since it is currently paid up for 6 months) to make it look better. I just wanted a central spot for information. Right now we are within a week or two of knowing if my kids have it and if it is positive then I know I will need support but I have yet to find anywhere but here for support and it isn't active.
P.S. As of right now the article on genetic testing is on the first page about six articles down. The article about growing up with an unknown medical condition is on the second page--it was my second article written for the site. There are several in the middle about the cancers involved as well. If you read them and want to talk with me--need someone to scream with about how insane all the testing and surgeries are-- then please send me a message there. People tend to leave mean comments so I don't look at those. I've only been diagnosed since 2007 but the symptoms began when I was 6. We thought it was just me but the geneticist seems to think my sister also has it and my kids as well. I'm an extremely strrong case in presentation so I'm trying to remember that and not freak out but it is really, really hard, Anyway I've had lots of experiene with the worries of cancer and look forward to maybe seeing at least one of you guys there since this forum isn't very active at all.
I writeon AC to express frustrations with being chronically ill but also to spread the word on our experience with genetic testing and Cowden's. I cannot share individual links but if you look there is a lot about my experiences. I can remember hearing of Cowden's and not knowing for certain I had it until I read others' stories. The MSN group that helped me was taken down so I'm honestly just sharing this with you guys as one person's experience. http://www.associatedcontent.com/user/659001/andrea_rowe.html
From what I have heard it is very similar to Cowden's which I have but one of the differing characteristics is head size is smaller. It basically causes the same things--lots of benign and sometimes cancerous lesions. I'm waiting to see if my 4 year old and 6 year old have Cowden's right now and am already a nervous wreck.
My son just got diagnosed with BRR and I am looking for others who are familiar with the genetic disease.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Created by AndreainArkansas | Last updated 13 Feb 2010, 11:15 PM
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