I have Garnder syndrome was diagnose 21 years ago when I was 20. I have an aggresive form of it. It's rare so I was hoping to find someone other them my family line that has it. I have had 9 surgeries from complications to it and need two more becuase of complications from my J-pouch.

Thanks
Miraclesx2

There is a gal I talk to on Facebook with that. Add me if you want, and I'll suggest her to you!

I just saw this thread, so apologies for not replying sooner.

You do realize that FAP and Gardners Syndrome are one in the same, don't you?

I didn't know that Chuckus...lots of FAP info here! Hope Miracle sees this!

Gardners Syndrome is actually a variant of FAP. You can have FAP without Gardners Syndrome, but you can't have Gardners Syndrome without FAP. If that makes since. Gardners Syndrome is basically a more intense version of FAP. At least, that’s what I've been told by my doctors for the past 15 years. I was diagnosed with Gardners Syndrome/FAP in 1996. Both my father and grandmother were diagnosed also. When my grandmother was diagnosed, she was in her 20’s and the disease had taken over and she ended up having to have 14+ surgeries. Luckily, I was diagnosed when I was 12, and haven’t had too many complications. If you have a facebook page, there is a Gardners Syndrome support group on there with many people who have been diagnosed with this disease that are very supportive.

Lemon - I hate to say this, but, your wrong.

FAP = Gardners Syndrome
Gardners Syndrome = FAP

They are one in the same.

Dr. Gardner is the one who really "found" the other manifestations that can be presented via FAP. That's all.......I don't know who your Doctor's are, but, like most of them in the medical community they just don't understand or know. That's all.

So, I just wanted to keep the record straight. So many people think they are two different things and they aren't. They are one in the same.

It's all in a name, but they are pretty much synonymous. Gardner Syndrome is the historical nomenclature for FAP. Gardner use to be considered a type or variant of FAP, but the use of genetics to identify the underlying cause shows that both FAP and Gardner is typically caused by the same alterations in the same gene (APC).

I was labeled with "Gardner syndrome" when I was 10 due to my numerous cysts, jaw osteomas and family history of polyposis by my pediatrician and dentist - who had only read of such condition way back in medical school. My dentist actually stepped out of the office to look it up, and brought back the medical book to show my mom. She said, "Yeah I have FAP and so does she." When I had my first scope 4-5 years later I was diagnosed with "FAP" by my GI/colorectal surgeon (and J-pouch guru). To think of it, I don't think I have ever heard him say Gardner syndrome.

This name-game occurs in other genetic syndromes in which there is a spectrum of possible physical features.

Mind-boggler: Some individuals with Gardner Syndrome features may have MYH-Associated Polyposis (MAP) and not classic FAP... always exceptions to the rules.

To take this name-game way back, FAP use to be called just FP. The condition hasn't changed, just our (and healthcare's) understanding of it.

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PS- Hi Chuck! I know, I know, I'm rarely on here... job keeps me busy, and I don't have many J-pouch problems. Hope you are well.

This message has been edited. Last edited by: SJ916,

I was diagnosed with FAP Sept 23 2011. My geneticist is C. Richard Boland, he came up with one of the tests for LYNCH actually. Brilliant geneticist.

anyway, I have a germline mutation of the APC gene (3175del5)that causes my FAP. I am the first one to get it, age 35 now. Stage 1 colorectal cancer, having BCIR surgery next month.

Hello! I agree, Gardner's Syndrome and FAP are not the same, they are closely related but far from being one and the same. Everyone who say they are the same, I have learn two things: they don't have All the Facts; they are closed minded and are not open to the Facts. I have Gardner's Syndrome as well as my older sister. I have not met anyone as of today with it outside my family. (My Mother died of it when she was 27.) It has made me a stronger person. I live in Nashville, TN. I had my first operation in 1994. I know it has been about year since your post. I am open for talk concerning Life with a j pouch 24/7/365. It's about time I share my Life with my J pouch with others. It is more mentally than physical. 615-207-7117. If no answer, leave message and call back. This is for everyone, call me and I will share and help. Happy Thoughts lead to a. Happy J pouch

It is hard - confusing - to me to try to figure out where I fit:
I was diagnosed with MYH-associated FAP, at age 51, back in Spring 2009.
My extensive polyposis was discovered only via routine initial colonoscopy at age 50; then genetic testing failed to confirm APC coli mutation; then subsequent testing at Emory University confirmed two different mutations, one on either side of my "MYH" gene. At that point they officially diagnosed me, as I said, with "MYH-Associated FAP."

Though I had had no signs or symptoms of illness prior to that first series of colonoscopies, when the polyposis was so evidently extensive that the GI doc could not manage it, I had to have the proctocolectomy/IPAA (JPouch) surgery.

During the course of moving from discovery of initially about 75 adenomas throughout my whole colon and rectum, toward a genetic explanation for it, I tried to study up on FAP, and found that a large, benign tumor that had been discovered and excised from my jawbone incidental to oral surgery 15 years earlier might be relevant - who knew?! Then my GI specialist at UNC confirmed that it was.

In addition, more recently in the course of further dental work, it took four different fittings for the dentist to try to get my upper denture in place; and the dentist ultimately explained that several of my teeth were "malformed."

Within the next two weeks I'll be having my first real course of surveillance testing since my surgery 2.5 years ago. One thing they will test for certain is a thyroid ultrasound.

In addition to all that, I have had several different skin anomalies - some longstanding, some more recent - that, too, COULD be related to my FAP, but who knows for sure? Several small, benign soft tissue tumors on chest, neck, face and leg; some seborrheic keratoses on chest, and more recently emerging on arms, legs and even face; and within the past two years SINCE my surgery, a very significant emergence of a bunch of tiny dark freckle-like things -- not actual freckles influenced by sunlight, but instead what the doctors call lentigines - sort of dark blueish/brownish -- that have been increasingly covering my hands, from fingers to wrists; my nose and cheeks; the tops of my feet, and my knees and above - again, hundreds of these little things, some of which have emerged in tight and darkening clusters - all just within the past two years since my surgery! The professionals have all assured me these skin things are all benign and harmless -- that's a good thing, of course. At the same time, though, here I am a 54 year old man, I am self-conscious as my nose/face and extremities are becoming increasingly disfigured, professionals have basically said there is nothing much to be done unless I choose to cover up (make-up!); and this stuff is apparently all stemming from the same failure of tumor-suppressing cellular mechanisms that account for the polyposis in the first place.

So from all I have read it seems like I have have some combination of: "FAP"? "MAP?" "Gardners Syndrome?" "Peutz-Jehger Syndrome?" And it seems like it doesn't really even practically matter - my skin will continue to do what it decides to do, I'll continue to get the surveillance the GI specialist and registry tell me I should have, I'll live the rest of my life with the changes the JPouch has caused me, and I'll just be grateful that I managed to be able to surgically defeat a sneaky, evil cancer syndrome that had managed to come "that close" to getting the best of me (dysplasia was Stage 0 and polyposis was described by the surgeon as "carpeted" by the time colon and rectum were removed).

I was blessed with the great good fortune of being referred for a "routine" 50 y.o. colonoscopy which set into action a chain of events that forced me to learn a whole lot about something I'd never have chosen to learn about. I get to see my kids grow up; and am reassured it would be extremely unlikely they would bear offspring with the same recessive disease. My denture does fit. My skin concerns are strictly cosmetic.

Maybe the whole field of medicine that only discovered my particular mutations less than ten years ago still needs some time to sort out its own understanding of this disease. Maybe the fact that fewer of us are dying from colorectal cancer today will allow medicine to learn from us, as we live to older age.

Do I have "Gardner Syndrome (not FAP)"? I'm not really sure; and in my case I'm not so sure it really matters.

What are your thoughts?

~~ Frank ~~

Having the actual genetic test I don't think matters. At least that is what I was told it was my colonoscopy, freckles in the eyes, bone tumors, extra teeth, lipomas, etc. that told them I had FAP. And yes FAP and GS are the same. I did the test since I am part of a clinical trial just for the reason you mention, they need to learn.

Here is a case my doctor had. A whole family was dying left and right from colon cancer, they all tested negative for the gene and his lab finally found the mutation and now that test is available for others to have. He is a brilliant geneticist and known world wide for his work with FAP and LYNCH. If you ever want more answers I would think about contacting Richard C. Boland out of Baylor Hospital in Dallas, TX.

You are also welcome to call me or msg me. Every year in Dallas they have a FAP/GI Cancer conference as well. I missed it this past March since I was on a well needed vacation but will go next year.

Vanessa, where could I get information on the FAP/GI cancer conference in Dallas? I'm just up in Denton and wouldn't mind checking it out next year.

Diagnosed with FAP and Stage I Cancer 12/2011.
J-Pouch surgery 1/24/2012.
Take down 4/26/2012.

You can contact Mildred at Dr Richard Boland's office at downtown Baylor campus. Or email me later on in the year and I can put you on as a +1 to my RSVP.

I'd go see Boland if you are local pretty much. He is a brilliant geneticist and he also runs a clinical trial for FAP that I am part of. I want people 50 years ago from now able to use my records to help get rid of this disease.