Cowden Syndrome

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Cowden Syndrome
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  • About Cowden Syndrome
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    Community Voices

    Hi all wondering if others with above have flat feet?

    1 person is talking about this
    Community Voices

    27 and newly diagnosed with ADHD

    I finally have a name for it. The thing that made me different from everyone else.. my sister my brother.. my peers.. I’ve always felt so misunderstood. Does anyone have any tips, and tricks? Or helpful things to share about being a women with ADHD?
    This post isn’t a sad one, it’s the empowering kind! If you see this and you still feel unheard, please keep asking questions or finding new doctors.. with the right one.. everything will click and all the dominos will fall into place 💜 peace is coming you guys! Just keep fighting! #ADHD #adhdwoman #CowdenSyndrome #MentalHealth #Disability #IGotThisNow

    8 people are talking about this
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    Finding life hard.i know i have the fight for more fight.
    Knees are dodgy.got bone cysts in knees.need to be drained and rebuilt with new knee cap.
    Im a difficult case.ive heard that before.will need it all done bespoke made to fit.
    I used to love dancing as i did other things.maybe ill be able to.i know i can.

    4 people are talking about this
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    As if cowden syndrome isnt enough to deal with my knees are playing up.before lockdown had xray said wear and tear.got mri thursday and then chat with consultant.
    I shall SHALL continue to fight. I need my me time to put my head in the right frame of mind.
    I will CARRY ON.

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    Community Voices

    I’m leaving my job at the end of the week and it’s scary . It’s scary and sad how abusive the work environment has become since I started working there two kids and three surgeries ago. It’s also frightening how I did not realize how hellish it had become till I was on medical leave. Now I’m doing my two weeks. I’m back to drinking which I had not felt the urge to do the entire time I wasn’t working. It’s taking time to emotionally disentangle like an abusive boyfriend. But thank god the process has begun this is a scary but hopeful time

    3 people are talking about this
    Community Voices

    I too have cowden syndrome and many a time
    I think why me.ive had 3 operations on thyroid.1 to take a sample, the other to remove half and then 3rd total thyroidectomy at 30 was when it wrapped around my airpipes in a dangerous way and had to come out. It was stopping me breathing.

    I had lost my mum to cancer and was adamant if ever i had children id get regular mammograms so my children could have a mum around.at 42 cancer was found..I had a mastectomy and reconstruction.3 months later i had a reconstruction on other breast and chemotherapy which i hated as was sick as a dog.
    It took 1 yr to get the results from a blood test as i asked for regular mammograms at 40.

    I was put on tamoxifen. My periods started to play up.
    Had to have polyps removed on and off for a few years till i had a prophylactic hysterectomy. At 50 i decided i wanted my left breast gone.i had a feeling.mammograms were clear but a grade 1 lobular cancer was found.

    Colon is being monitored as is kidney where they found a mark as an incidental finding. 2 sites on the 'cowden list'.

    I have had other thimgs to contend with unrelated to cowdens but this is something that always stay with me. I keep myself to myself and dont talk about cowdens with people who dont know me well. I have days the fight gets me down.grappling with thyroid tiredness and carrying on can be overwhelming but i try.

    To anyone who has a rare disease, dont let anyone stare at you.we are unique.and for some reason , ive been picked.

    #thyroidornothyroid #CowdenSyndrome #FightCancer

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    General meandering of a tired lady #Caregiver #abusesurvivor #CowdenSyndrome #ASD

    We can not change the people around us. The idiots, biggots, judge mental types , the ablelists the know it all’s. What we can do is enhance ourselves to be the best version of ourselves we can on any given day. It won’t always be the same. But if we try to carve out a space within ourselves to be more accepting of ourselves and others kinder, gentler, sweeter we may be able to cope with the monumental challenges we have been dealt. Personally it’s hard. It’s really hard. I’m a mom, I’m overweight and overworked and overwhelmed. I’m dealing with my own health and my demons of pains past. I’m caring for a child with special needs and my husband is a dear but has.. well it’s a long story.
    I want to try to .... thanks for listening #Chatspace #nojudgement #Kindness #Selfcare #gentle

    6 people are talking about this
    Community Voices

    Am I a huge nerd.. or are my friends spenders??? #Clueless #stickershock #Omg #Parenting #Caregiver #CowdenSyndrome

    Ok.. so a young man and young woman choose to get married. They are setting up their first apartment and preparing for a wedding. How much does an engagement ring cost. Please specify if this is with the cost of the stone or just the setting.. cause I’m freaking out here just a little

    4 people are talking about this
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    Post hysterectomy hormonal chaos! #CowdenSyndrome #Hysterectomy #Postop #snri #surgical recovery

    Does anyone have experience using Effexor for hormonal craziness? Or any positive experience with Effexor? Looking for encouragement

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    Community Voices

    My mother in law called to ask how I’m doing post operatively. I thought hubby had told her what the surgery was. He hadn’t. I did. And she low key freaked out. Then I had to comfort her. Strange turn of events

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