Resources to Support Those with a PTEN Mutation or Cowden Syndrome

Cowden Syndrome and other conditions caused by a deletion or mutation within the PTEN gene are rare though often undiagnosed. Because these conditions affect more than one area of the body, newly diagnosed people may feel overwhelmed, have questions, and be looking for support from others who have experienced what they are going through.

There was an MSN group for Cowden Syndrome that disbanded at some time within the past two years. This Cowden Syndrome support group helped me a great deal as it was where I found information that led me on the path to knowing I had the condition. Also, when we found I had breast cancer and I did not realize it, I learned other women who underwent precautionary mastectomies had similar pathologies. I did not feel alone at that point.

Because of earnings from Associated Content, I have been able to pull together a site to help support those who have Cowden Syndrome and other PTEN gene mutations. I am doing this in honor of the MSN group that helped me. The site was launched today and it currently has no other people who have posted but I am hoping that changes once word gets out. The site location is www.cowdensyndromesupport.com. The site is rough looking right now but will improve over time.

I am not an expert and at this time I am unsure an expert will be able to join us at the site though I do have hope. Because I am not an expert, I have located other resources and people who can help if you have the PTEN mutation or believe you do.

When I contacted St. Jude Children's Research Hospital in Memphis, TN to see if my children would be eligible for treatment if they have Cowden Syndrome, I was told to contact a group in Cleveland that is doing a PTEN study. If you would like more information about this study, the website address is http://www.lerner.ccf.org/gmi/research/pten/ I believe this study is currently testing those who believe they may have Cowden Syndrome but who are unsure.

Dr. Charis Eng is department chair at the Lerner Research Institute where they are doing a lot of work in regard to cancer and genetics. Dr. Eng is the person I was referred to from St. Jude hospital and therefore I knew she must be amazing. After looking at her profile, I realized how amazing this doctor truly is. She was accepted to the University of Chicago at the age of 16 years old! Her profile online is at http://www.lerner.ccf.org/gmi/eng/ Dr. Chang was extremely nice and helpful to me.

A good site for new patients in regard to Cowden Syndrome and what you should be doing to protect yourself against cancer is http://www.uihealthcare.com/topics/medicaldepartments/cancercenter/cowden/index.html

The best site (in my opinion) for open communication with others going through the same about Cowden Syndrome is http://www.ptenworld.com/

My source: http://en.wikipedia.org/wiki/Cowden_Syndrome