I have Cowden's Syndrome as well. I have had lump related operation from when I was very young till about nearly 8 years ago I think. My mum was diagnosed with breast cancer, was also tested for Cowden's as well, in 98 or 99. There was big discussions about my sister and I getting Cowden's but I would notice that Cowden's would not be on my sister, but I would end up having it. I got tested in my late 20's low and behold, it was true. I had seen a geneticist who said, you may or may not have it. But you show some signs of it, your family history shows it, the operations you've had and also because you have a spotty nose and a large head. Now, I have tests three to five times a year and I don't regret it. Just to say, I know this feeling all too well.
Hi, Matthew! I was also diagnosed with Cowden Syndrome in September of that year. I removed the thyroid due to the nodules and discovered polyps in the stomach and intestine. So my doctor ordered the genetic test. I am a little (or a lot!) Overwhelmed with the amount of information and exams. Here where I live (in Brazil), the vast majority of doctors do not know the syndrome and are starting to study because of me. And none of them have another patient with this syndrome. It is comforting to see videos and comments like yours to remind me that I am not alone.
@@sarahbentopereira9312 Hi Sarah! Yeah i felt like that when i was diagnosed, i feel like an air steward, when i am explaining to people because it’s a routine i have to do every time, when a doctor or a surgeon doesnt know it. I had a stomach surgeon recently who thought, i was coming to see her because i felt really unwell, when in fact, i was there for a cowden’s syndrome thing. I only came across one surgeon who knew about cowden’s syndrome, which is a rarity, he was rattlong off a list of tests i should have and ironically he was a surgeon, that was meant for my mum, so go figure.
@@sarahbentopereira9312 ola eu tbm estou em tratamento pois descobri um tumor no cérebelo ( lhermite duclos) e bócio multinodular . Se quiser podemos conversar sobre o assunto.
I have Cowden's Syndrome as well. I have had lump related operation from when I was very young till about nearly 8 years ago I think. My mum was diagnosed with breast cancer, was also tested for Cowden's as well, in 98 or 99. There was big discussions about my sister and I getting Cowden's but I would notice that Cowden's would not be on my sister, but I would end up having it. I got tested in my late 20's low and behold, it was true. I had seen a geneticist who said, you may or may not have it. But you show some signs of it, your family history shows it, the operations you've had and also because you have a spotty nose and a large head. Now, I have tests three to five times a year and I don't regret it. Just to say, I know this feeling all too well.
Hi, Matthew! I was also diagnosed with Cowden Syndrome in September of that year. I removed the thyroid due to the nodules and discovered polyps in the stomach and intestine. So my doctor ordered the genetic test.
I am a little (or a lot!) Overwhelmed with the amount of information and exams. Here where I live (in Brazil), the vast majority of doctors do not know the syndrome and are starting to study because of me. And none of them have another patient with this syndrome. It is comforting to see videos and comments like yours to remind me that I am not alone.
@@sarahbentopereira9312 Hi Sarah! Yeah i felt like that when i was diagnosed, i feel like an air steward, when i am explaining to people because it’s a routine i have to do every time, when a doctor or a surgeon doesnt know it. I had a stomach surgeon recently who thought, i was coming to see her because i felt really unwell, when in fact, i was there for a cowden’s syndrome thing. I only came across one surgeon who knew about cowden’s syndrome, which is a rarity, he was rattlong off a list of tests i should have and ironically he was a surgeon, that was meant for my mum, so go figure.
@@sarahbentopereira9312 ola eu tbm estou em tratamento pois descobri um tumor no cérebelo ( lhermite duclos) e bócio multinodular . Se quiser podemos conversar sobre o assunto.
@@mirianmaciel7837 what kind of treatment are you getting? I have cowden syndrome as well.
Can you share a little bit.. where do you live I have the same
your awesome, I can totally relate to not knowing what to do with ones future but hang tough 🙂
I have this too! I had thyroid cancer when I was 11.
hope you're doing fine now
Just been diagnosed 3 years ago
Your awesome! ❤️
More power to you ❤️😇
Hey I have cowdens syndrome. I'm 28 and feel almost the same way she does
Hello can you guys share about this disease I have cowdem syndrome as well I would like to know more about this also met people with this syndrome!!
Hi
@@Nolan7347 hi
@@margaritalopez6274 Yeah I have cowden too. Do you ever feel sad?
May Allah bless you !