NEWSLETTER
My name is Diana. I live in Southeast Michigan. I have two children in college. My husband works full time, but I stay home due to the various illnesses caused by Cowdens. One of my children has Cowdens and the other one dosen't. I started this group with my friend Laura because we had no one to talk to when we were diagnosed. My main battle with Cowdens has been AVM's.
My name is Pat. I live in Lowell Massachusets. I have two children. One has BRRS, the other one we are awaiting the results. I am currently seperated from my husband. We deliver about 250 newspapers a day. I am in the process of having my thyroid removed. I have Cowdens.
My name is Margaret. I live in Lynchburg Virginia.I was diagnosed last Feb and nothing has been the same. I am a different person tougher,stronger and more determined to take care of myself. I had renal carcinoma last October and lost a kidney. In December I had a thyroidectomy. Life continues to be a big battle the primary care physician's newest fight is how to manage care of my breasts as I am the only one in my family without breast cancer. Cowdens has made me see how important it is to express my feelings and live my life to the fullest so it hasn't been that bad. I had melanoma in stu 6 years ago,givgival bulbular hyperplasia and benign tumors on my left knee along with many skin lesions.
My name is Robin. I am a preacher in Wisconsin. My sister is a member of the group. I had my thyroid out. I have breast cancer. I have a tumor growing on my ovaries. I had 24 surgeries on my vocal coards. Being a minister who is half horse is fun!! I have more scars on my throat then Frankenstien could dream of. I had my galbladder removed. I have scolliosis.
My name is Nancy. I am a teacher in Dallas Texas. I am 49. My grandmother may have Cowdens Syndrome. I was diagnosed 11 years ago. My family history is not dramatic. I have had multiple lipoma's,a thyroidectomy and breast cancer. I am currently receving radiation for endometrial cancer. For the previous 20 years my health has been good, I have been lucky.
My name is Leann. I have been a member of the group for about a year. I have had the usual lumps. I had the surgeries on my groin and on my neck. I had utterine cancer. I have fibrocystic breasts. My associates are in culinary arts and do food catering. I live in muskegon Michigan. I am a sucker for stray dogs. My newest is a golden retreiver named Sparky that was going to the pound so i took him. My husband is in The National Guard and is awaiting orders to The Gulf. I am glad I found this group.
My name is Dennis. I live in Louisville kentucky. Cs/Brr has turned my life upside down. It has made me a better person. I have three children and four grandchildren. Two of my children have been affected by this. I have had the growths on the gums. I had colon cancer in 86. I have my stumache and upper track checked every other year. My kids and I are giving more blood to OSU. we are part of their study.
I am a 26 year old female. I was diagnosed with cowdens when I was 15. I work about 25 hours a week. I have a three year old boy. We are not sure if he has it yet. As a child the only symptons I had were chapped, bumpy lips. I was told to use different cremes. A new dermatologist sent us to mayo. I do my routine checks with the help of my team of doctors. I am not the best patient. As an adult I have had my thyroid completly out and have had lazer surgery to remove the bumps on my lips.Krista
My name is Libby. I live in Seattle. I have a sister who is a member of the group. I was diagnosed with Cowdens in 1996. I have had breast cancer three times, also renal carcinoma, endometrial cancer and thyroid cancer two times and basal cell cancer. The good news is that I am still standing and plan to keep it that way!! I have been on SSA since October of 96. I do part time work merchandising Hallmark cards. I have tests every 4 months which keeps me ahead of things. This group is a great place to share info and be supportive of other people with Cowdens. Other people don't understand this lovely disease and its great to talk to people who get it.
My name is Barbara. I have Cowdens. My sister and youngest daughter have it also. I was diagnosed at 40 when my sister was diagnosed by a Swiss doctor. I have not had too many problems. I had some breast lumps removed at 17. In the last 5 years I have had my thyroid out and a hysterectomy. I have had no nasties. I have some skin tags that i get moved on a regular basis. I was glad for the diagnosis as my daughter had problems with lumps and bumps. Reading the messages I thank god for the NHS. I go to the local hospital for my tests. I appreciate the information on the site, I use it to educate the doctors in England.
My name is Annette. I live in Lawley Florida. I was diagnosed with Cowdens a couple of years ago. I am healthy now, but some of my family is currently battling cancers associated with cowdens. I have a new grandbaby that looks just like her mother. She was 8 pounds 6 ounces. Her name is Alexis Cheyenne. This morning we found two hamartomas on the back of her leg. Looks like we have another Cowdens person in the family. She is beautiful large head and all. I am a very proud thankful grandparent.
My name is Lou. My wife has been operationally diagnosed with Cowdens. She was diagnosed in January of 2003. She has had thyroid and breast cancer. She has a big head but you would not know it by looking at her. We are currently figuring out our next steps. We are Canadian and while our doctors are nice they don't have many answers. We have had to put having a family on hold for now. We struggle with our fear and anxiety but we go forward because we have to. In the end noone really knows whats going to happen to them tomorrow. Our faith, courage and love for each other and our families help us through. One day all this will be conquered were sure.
My name is Alayana. Hi and welcome from the Canadian constituency. I am the mother of an 8 year old boy with BRR. I made the diagnosis myself based upon the information from this site in December of 2002.Armed with this information I got a refferal to see a geneticist. By time I got there the geneticist had sent blood for testing. This board made the difference in contact information to Rob Pilarski at OSU to allow for a timely diagnosis. The mutation was confirmed in April of 2003. The doctors at the time had just been treating the vascular malformation and were missing the bigger picture. More research lead to diagnosis of scolosis,pectus exactum, hyperjoint mobility and ostopenia. We were also puzzled over his extensive dental work which indicated weak teeth. A bone density test revealed osteoporosis. The first recorded case in BRR. The timely diagnosis resulted in early intervention for my son. His spine is 2 to 3x weaker then an elderly person and we would not have known that untill a fracture. He is now being treated at Shriners by renowned doctors in metabolic and bone genetic diseases. Parents never stop learning and questioning. You are your childs health advocate not the doctor. If you need motovation rent Lorenzo's Oil, and keep coming back to visit us.
Update May 2003- Alyana has informed us that the radiology doctor misread the xray and her son does not have osteoperosis. we are all very happy for her.
What CS/BRRS means to me. Its a potentially devestating disorder. I don't want to use the term disease- that can turn the world upside down and wreck your family/your marriage and finances. I watched most of my family die within a few months of each other from this. It ruined me financially with the exception of marriage failure I've lived everry other pain there could be. Good side made me stronger,better, more compasionate, tempered by fire. My brother and I are survivors. I beleive God sent me to Diana in the first few weeks after diagnosis. Look what happened. She reached out to the world with all this being the result. Results? we are not alone. We have an extended family we can identify with who appreciate the trials,quirks and challenges we might face from this disorder. In the end we may live longer,definatley live better. In the near future we may spend time with each other. We have lifelong bonds. I smile at the gratitude and the thought of it.
Laura
My name is Frank. My wife and daughter have cowdens syndrome. This syndrome has had a dramatic effect on our families life. It has caused a great deal of pain, suffering and surgeries for them. It is difficult to see loved ones deal with health struggles. They are very brave to deal these health issues. Some days are better than others.I prefer to concentrate on the positive rather than on the negative. The positives are that these health issues have brought our family closer together. We celebrate the simple things in life and live each day to the fullest.We are working very hard to treat the AVM that my wife has and the vision problems of my daughter. We will continue to do our best to deal with the health issues associated with Cowdens Syndrome.
My name is Rebecca. I am the youngest of four daughters. I have been the sickest. I have had lipoma's and hemangioma's of the brain which caused hydrocephalus. I have also had a thyroidectomy and a hysterectomy. I have tumors on the ovaries which are actually hemangiomas. I have fibrocystic breasts. My two older sisters have Cowdens Syndrome my father has it too. I am interested in being part of the OSU study.
