Alyssa Hopes That By Sharing Her Story On Gardner Syndrome, Others Will Find Hope


My name is Alyssa, and I have Gardner syndrome. I am a college student, studying psychology at Western Washington University. I am graduating in March 2013 and hope to continue my education to become a registered nurse. My goal is to work with people who have cancer.

Right now, I am a living skills specialist, and I take care of adults with developmental disabilities. As I am about to graduate from Western, I have recently started a blog and am in the process of writing a book about my experiences with my dad having familial adenomatous polyposis (FAP), me being diagnosed with Gardner and how it has positively impacted my life. I am in the final stages of editing my book and looking for ways to share both my book and my blog.

My hope is that sharing my story can help others find hope, and I just want people to know that good things can happen from negative experiences. Throughout my book, I make meaning of my experiences. I believe that once meaning can be found within challenges you have faced, you have overcome them.

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Global Genes Comments

  1. Hi Amber, I’m so sorry for your condition and the loss of your mother. I have had a Gardner fibroma removed from my face….no scar. I just had a colonoscopy and they found a very small benign polyp. They think I should have a blood test to determine if I Have The Gene for Gardner Syndrome even though I have no family history of the disease. If you would like to talk let me i would like to know more about gs know….i am older than you , I am 52 I am also a local business owner in the Buffalo NY area. But also have a home in South Florida…I’m not sure if you listed what area you are from.

  2. Alice Marie Brown "Texas" says:

    I had testing done when I was as 21. My father Edgar Brown had it, some of my siblings 7 of the 10 have it. half brother died, half sister died from it. My father traveled the US as a lineman and he cheated on my mom a lot. At his funeral there were 27 of his kids there. I knew of 15. So ask your mothers if they might have had an affair with my father. There are more out there. My dad was Edgar Brown born 1927-1981 Arkansas. I am 54 now.

  3. Alice Marie Brown "Texas" says:

    I had testing done when I was as 21. My father Edgar Brown had it, some of my siblings 7 of the 10, half brother died, half sister died from it. My father traveled the US as a lineman and he cheated on my mom a lot. At his funeral there were 27 of his kids there. I knew of 15. So ask your mothers if they might have had an affair with my father. There are more out there. My dad was Edgar Brown born 1927-1981 Arkansas. I am 54 now.

    • Alice Marie Brown "Texas" says:

      I have it too, for the blockage, I drink Ice Tea every day of my life. I chew my food very well. There are foods I can not eat like corn, oreo cookies, cabbage, beans, you can find out from a doctor a list of foods not to eat.

  4. I don’t know where to start. I’m 43 with gs. I’m forced to stop working 11 years ago. Drs want to do surgery where I’m going to only have 4 ft of small intestines. I’m going ask drs if I can get a transplant. I keep getting blockages and that’s why for the surgery. I’m scared.

  5. Morgan Szymczak says:

    Hi Alyssa,
    Thank you for blogging about your experience with GS/FAP. I was diagnosed as a yound child through genetic testing, then recently found out I had GS as well. Even though I have a great support system, the unfortunate part of dealing with a disease is experiencing it alone; this difficulty is compounded by how rare the disease is, which, for me, has resulted in seeing many doctors that have absolutely no idea how to treat me. Sincerely, I appreciate your courage in writing about the frustrations of dealing with rare illnesses–because it reminds me that, even though the only people I know around me dealing with it are my family, there are still others out there feeling every bit as alone and lost as I feel.

  6. Stephanie Jalette says:

    I was diagnosed in my early teens like you were, Alyssa. And I had my boys tested through blood work early last year and found out that my oldest has the disease. Yesterday he went for his first endoscopy and colonoscopy and the doctor’s found over 50 polyps in his large bowel. They removed 20 of them and now we’re waiting on biopsy’s. I’m having a hard time dealing with it.

  7. tdadismanll78@yahoo.com says:

    Hi, my name is Jessica. I too have Gardeners Syndrome, I was diagnosed through genetic testing at the age of 25. I had to have a total Colectomy 6 months later. I am now 30 years old and I now have adenomous and ampullary adenomous in my stomach, small bowel, rectum and near my pancreas. I was just retested last week, (EGD and Sigmoidoscopy) my doctor (GI) informed me that he believes that the adenomous near my pancreas are ready to turn to cancer, he also tells me that there are many. Here is my problem, my doctor informed me that he feels that something needs to be done but he doesn’t feel comfortable doing it. His reason being that he has never dealt with this first hand and has only heard of a case like mine at medical conventions. He told me he could send me to a Pancreatic specialist here in my home state but doesn’t know if he will be able to help. He wanted to refer me to a hospital in St.Louis but that would be a great hardship on my family and myself as it would be at least a 500 mile trip one way.
    I also have other family members, including my mother, that also have Gardeners Syndrome. The older generation with the disease have had to have a surgery called a Whipple. They’re in my home state of Illinois, and while I lived there, we were all under the care of the same doctors that know a lot about Gardeners. He told me a few years ago that he strongly felt that I would need the same surgery in the future. I now live in Arkansas, I don’t know where to turn to receive proper care for my disease in the state that I now live in. It would be a great hardship for me to have to travel back to IL to receive care. It would be a 600 mile trip, one way. I need help to find a doctor in my area that can and will treat me and treat me properly. Does anyone have any advice on where I could turn to find a doctor closer to me? Thanks in advance and sorry for the rambling.

  8. Garrett Young says:

    Alyssa,

    I have GS and am a RN. I also have used my disease to motivate me to do positive things for the medical field and the world in general. Please contact me and I will tell you about a business that I have just started ‘Ropes4Hope’ (website is being developed now)

  9. Michael Sciacqua says:

    I’m 65 and was diagnosed at the appx age of 18 (1969) and had my first surgery 21 (1972). At that time they removed my large intestines, but left the colon. That would mean yearly colonoscopies. In appx 1978 I notice their was something wrong with my abdominal area. Surgery was performed and I had a fibroid/desmoid tumor which they were unable to remove do to all the vital body parts connected. That was also the year that they gave the condition a name, Gardner Syndrome. I developed a blockage in 1980 and had surgery again in Tacoma, Washington. They did surgery on the blockage, but I developed a fistula (sp leakage of intestine) I was there for 2-3 weeks then they sent me to UW where I had surgery the next day, spent another 6 weeks do to the infection. I have had appx. 50 colonoscopy and 20 endoscopies. I usually have about 36 polyps removed every year. The last 3 years the colon polys on a scale of 1-4 have been coming back as 3’s. My stomach which has about 100 have also just become 3’s. I’m having another endoscopy on Tuesday the 11/29 at OHSU in Portland. With the following week talking to the surgeon. They are talking about removing part of my small intestine and stomach.

    All of this is on my mother side.
    Grandmother
    mom
    siter (she also has a third set of teeth)
    myself.

    If anybody wants more info please contact me

  10. I need some help on my condition I have afap gene and I got it when I was 16 years old I had my colon removed and a jpouch was made . And I have a daughter and I’m now 23 years old and my blood mother died from it she had colon cancer she waited to late and my aunt raised me and she has it also but she had surgery and has a colostomy bag and just recently had the whipple surgery done . I’m so scared is there anything out there that slows the growth of this germ line down I have a daughter and I’m scared to leave her alone in this world by herself she needs me she only has me her fathers domestic and I don’t want to die and leave earth knowing my baby will go to a bad man like him I’m terrified of dieing Please some One out there help me . Find a way to live longer please😣😫😭😭😭😭😓😢😪😪😞

Trackbacks

  1. […] Recently I shared my story with The Global Genes Project and they posted it in their blog! /alyssa-hopes-that-by-sharing-her-story-on-gardner-syndrome-others-will-find-h… I would like to thank everyone who has encouraged me to share my story over these past few months. […]

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