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judycolby

Endo in England wants my family's blood

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Just got an email from Dr. F. He has found an endo in England that would like vials of blood from Bill, Justin & Jess. He is looking for genetic mutations.

I think that sounds exciting. I'm sure all three will agree to give up two vials each. Wouldn't it be great if this guy finds something, even if it's not from our blood. Just knowing that someone is looking at genetics is exciting.

Judy

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Judy, that's awesome! I am just glad somebody out there is looking into this stuff. Knowing more about where the disease comes from is always a good thing.

 

roll up sleeves and donate please!

 

Gina

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Who is the endo Judy? I am seeing a genetics endo team on Monday to discuss hereditiary brain tumours.

 

Best of luck,

 

Diane

xx

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This is awesome Judy! I hope they find the link or mutation.... because we already KNOW that this has a genetic component.

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I'm sure they'll all give their donation! Just need to talk to the lab about doing the draw and get instructions from Dr. F.

Dianne,

Dr. F didn't give a name but I'll ask when I email him.

While I do find this exciting I have to wonder what can really be done if he does find a link. Maybe that is farther down the road.

Judy

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Judy,

I think they are finally figuring out that cushing's is genetic. NIH is looking into the micronodular adrenal hyperplasia. My grandaughter is probably going to NIH for further testing as she has been diagnosed withcushing's too. Will be looking forward to these studies. Violet

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While I do find this exciting I have to wonder what can really be done if he does find a link. Maybe that is farther down the road.

 

My hope is that it can make the testing process easier for other people in the family. Although I'm sure you'd have to have a doctor that actually believes in Cushings...

 

 

I'M GOING TO BE A GUINEA PIG!!!

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Sounds exciting...and it could provide Jess and Justin with some good information that may prove to be very important when the time comes when they want to start families.

 

Jenny.

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Jenny, actually, I'm encouraging my kids to adopt. I'm sure Bill's sister has it and we think there's a good chance his mom did too.

Judy

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How exciting! Do try to find out where the blood will be getting sent. I find it ironic that your family's blood is getting sent here and bits of one of my dodgy adrenals are getting sent to the US - playing swaps lol! Here's hoping all this research will do some good in the future. ^_^

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I'm really glad that someone is interested in Cushie blood! Curious about the relatives you mentioned. Did they look and or act Cushie? Did it skip any generations or stick to a gender?

 

I swear, all of our adrenal glands should be cataloged and studied.

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Judy and Jess - this is very very cool. While I really feel so badly about what your family has gone through, god love you for using your expierences (and blood!) to help others in the future.

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I'm really glad that someone is interested in Cushie blood! Curious about the relatives you mentioned. Did they look and or act Cushie? Did it skip any generations or stick to a gender?

 

I swear, all of our adrenal glands should be cataloged and studied.

 

We don't know about his mom, because she's no longer a part of his life and he was adopted later in life. Now for his siter, she looks cushie and also has many symptoms. His brother used to look adisonian, but now, in my opinion, seems to look cushie and acts that way. He probably has other brothers and sisters, but they're lost in the mix, so that's as far back as we can go and we don't want to go down the other way in the line...or at least me:P.

 

Dad wants to see if we could add his sister's blood in the mix to see if there can be a link even though she isn't diagnosed, just to see. But he hasn't asked Dr. F. about it.

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This is very exciting and a huge gift that you are giving to all of us.

 

I hope the researcher can follow up with you and let you know what he learns about your family and how it might fit into the picture of Cushing's.

 

You're all taking huge steps forward and making tremendous progress towards good health again. You are fantastic people to take the time to give back in this amazing way.

 

Many thanks to each of you!!

 

Bug :wub:

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How exciting! Do try to find out where the blood will be getting sent. I find it ironic that your family's blood is getting sent here and bits of one of my dodgy adrenals are getting sent to the US - playing swaps lol! Here's hoping all this research will do some good in the future. :wub:

If yours hasn't shipped yet, maybe they'll cross paths! That is kind of funny.

I sometimes wonder if my generation will be around to see any big changes in the testing and dxing of Cushing's. Hopefully if we're not, the next generation will be able to reap the rewards.

I also hope that we can find out what the researcher finds.

Judy

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Judy, that is great! Any research that can be done to increase knowledge about Cushing's is well worth donating some blood. I'm so glad that someone is finally ready to explore the possibility of a genetic component for this. Can you imagine how many more cases might come to light if entire families now get tested?

 

Ellen

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....There's a couple of them "after my blood" at the moment but not for research....for revenge.

 

Great news Judy.......you'll put Colby on the map again.

 

Dave

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I think you need to stipulate that they name any discovery "Colby", vs. the docs last name!!!!

 

I'm really glad someone is reseaching this and that Dr F has helped make the connection to your family.

 

Thanks for sharing such exciting news, this is really great!!!!

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Hi Judy,

 

The people I am seeing today are in the Genetics Endocrine Unit at Addenbrookes Hospital in Cambridge, UK. Their names are Dr Soo-Mi Park and Dr Helen Simpson. As I recently found out my step-brother was rushed to hospital with a tumour and has been diagnosed with cancer and also my Grandad adn Uncle on my Dad's side had brain tumours as well as my Nan on my side, we need to find out whether this will effect our son as well as my step-siblings off spring (half brother and sister on my fathers side). I cintacted my endocrine consultant Dr Mark Gurnell and he got me to contact my neurosurgeon Professor John Pickard and I git the referal. Fingers crossed, we all get some answers and can beat this.

 

Best wishes,

 

Diane

xx

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Judy,

That is great news. You guys are doing a wonderful thing

for future generations and should be very proud of yourselves

for everyone that you will help. We are all very proud of you.

 

Kimberly

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