When I was 15 I was diagnosed with Cowden's disease. Also known as Multiple Harmatoma Syndrome it is a mutation of the P10 gene. At the time I was the 29th recorded case and my dad was the 30th (it is a genetic disorder). Wondering if anyone has heard of it or knows anyone with it.

Thanks,

Julianna~

    

Hi Juliannam,
I am due to be tested for Cowden's disease next month. I have had some prelimary discussions with the geneticist who will be testing me, and she feels it likely that I have this condition.
I am 56 years-old and have a history of breast cancer, pre-cancer of the uterus and have a benign thyroid nodule. Since my early thirties I have also had small bumps on the palms of my hands and soles of my feet. These were recently diagnosed as punctate keratoses and are associated with CD.
As you already indicated, it is a genetic condition and thought to affect about 1 in 200,000, although it is considered that the disease is probably more common - the signs are often not recognised by doctors. The child of someone affected by it will have a fifty percent chance of having the disease. The benefits of indentifying it early is that someone can be screened for the manifestations associated with it, notably breast cancer.
I have done a fair amount of research, and I must admit it does not make good reading, but you have to remember that although you have a greater predispostion for cancer, it does not necessarily mean you will get the disease. Doctors specialising in integrated medicine could probably give you some good advice on how to keep the genetic mutation 'switched off'.
Regards from the UK

Hi. I am from New Zealand. I am 25. In 2009 I was diagnosed with Cowdens disease too...NEW Zealand is a tiny country compared to other countries like America but apparently there are about 18 people with this disease in nz. it is quite rare and I guess that means we are rare species too which doctors LOVE to study us. I had 12 lumps removed from each booby. I had adenoidectomy in 2008. I have all the clinical features. Macrocephaly. I have thyroid nodules and nodules on my parathyroid gland but hormones arent affected. I have little lumpy things not a lot on my hands and feet and some on my face. It feels like I have gained friends all over the world through this.
Doc told me about masectomy as prophylactic method but I want to get married and breastfeed my children... I could feel lumps have grown again in my boobies. Need to do MRI every year until I die. I did D and C as well.
if you want to talk about it..I am 247365 available to lend my ears!

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