Gaucher Disease

[TheLadyaimless]

hey, nice video!! glad so see it in youtube..... type 1 patient from Estonia :)

[Alfgunnarp]

Thank you! I`m a type I patient from Norway.

Love the song (and video of course)

[TheLgreeni]

THANKS FOR THE VID NEEDED IT FOR A PROJECT

[mishalalexander]

ur job won't become a waste

[KroegerFan44]

@mishalalexander

My job...?

[LordOut16]

this is a very good video.

[firedragon689]

good job on the video im sure it hepled somebody(:

[KroegerFan44]

@firedragon689

Thanks!!! I certainly hope so because that's one of the main reasons I posted it.

[deaneodean]

nice video ..

[KroegerFan44]

@deaneodean

Thanks, I really appreciate that!

[proline430]

this sucks almost as much as nickelback

[KroegerFan44]

@proline430

Incompetence really is a growing problem in our society....

Anyway, unless you can bring more to the table than simplistic commonplace hate messages, it's really not worth the effort it takes to sign in to read this nonsense. No offense, you just don't pose much of a challenge for me.

[NeytiriAndJakeAvatar]

so sad ;( i feel like getting a blood test right now at 11:00 ;)

[KroegerFan44]

@NeytiriAndJakeAvatar

Ha_ha! I'm glad you watched my video. I've been trying since 2005 to raise awareness of this disease but it's not easy. No one knows about them, even most doctors haven't.

Anyway, I hope you can help me by referring this vid' to your friends and family. I would greatly appreciate it.

[KroegerFan44]

@NeytiriAndJakeAvatar

Ha_ha! I'm glad you watched my video. I've been trying since 2005 to raise awareness of this disease but it's not easy. No one knows about them, even most doctors haven't.

Anyway, I hope you can help me by referring this vid' to your friends and family. I would greatly appreciate it.

[NeytiriAndJakeAvatar]

@KroegerFan44 loll ya i told my dad but he seemed confused so ill try again later LMAO

[KroegerFan44]

@NeytiriAndJakeAvatar

I know the feeling....

When I was first diagnosed, the doctor calls me and tells me I have this but never elaborated on what that entailed. I was left with nothing and nowhere to turn and all because these diseases aren't common knowledge.

It's all very confusing when you first learn of them.

[NeytiriAndJakeAvatar]

@KroegerFan44 thats so sad

[KroegerFan44]

@NeytiriAndJakeAvatar

Diseases tend to be that way...

[NeytiriAndJakeAvatar]

@KroegerFan44 thats so sad :(

[NeytiriAndJakeAvatar]

@KroegerFan44 thats so sad :(

[NeytiriAndJakeAvatar]

@KroegerFan44 thats so sad :(

[Diabolous3x]

nickleback doesn't rock, its too soft.... nickleback 'pop-rocks'..... In Flames... now that's a band that ROCKS

[KroegerFan44]

@Diabolous3x

Ha-ha! Oh, it's been a while since anyone has tried their luck with me but I think I can still keep up.

While you are right to a certain degree, on Nickelback's two newest albums there are a few tracks that are considered pop. But, Nickelback has been known to experiment with different sounds because they have to please people from every walk of life, unlike most bands who's fans are generally in one age group. You see Nickelback has to juggle several different genres at once.

[ixchel003]

Like everyone else in here your presentation helped me for my biology project over this disease. Thank you so much. I'm pretty sure my classmates will have a heart attack when they hear how much you have to pay per month.

[KroegerFan44]

@ixchel003 I'm always happy to hear that my videos have helped in some way.

Oh, and Cerezyme comes in vials from the biotech company "Genzyme", which means the price varies from hospital to hospital. It is already quite expensive straight from the source but the hospitals will charge you extra for their services.

Believe it or not but I used to have to pay more for it when I lived in Arizona.

Anyway, thanks for leaving me a comment, I really do appreciate it.

[km246175]

Does anybody know of a good blog site to ask advice and here about people with Gaucher type 1's stories???

Any recommendations would be helpful. Thanks!

[KroegerFan44]

@km246175

You can join the Genetic Disease Online Discussion Group by going to the National Gaucher Foundation's website. At the top of the page you'll see various links like "News, Programs, Media, et cetera but the one you're after is in the far left corner which simply says "Gaucher".

[KroegerFan44]

@km246175 ~~CONTINUED~~

Once you've put your cursor on the link "because you aren't required to click them" scroll down the list to "Support Programs" and click on "Genetic Disease Online Discussion Group". It's fairly straightforward from there. However, you will need a Yahoo account but that isn't a big deal considering that this is the best place to ask advice and there are more Gaucher patients on this group than on any other.

[aardigmeisje]

Really nice video. Thanks for it. It helped me making a presentation voor Biology. (:

What song is playing during the vid' ? i really like that song but don't know the name. :P

[KroegerFan44]

^_^ You're welcome! It's great to hear that so many people are finding my video useful.

..and this song is "My Immortal" by "Evanescence".

[aardigmeisje]

Haha, (:

Thanks ! ^^.

[kandu813]

thanks for this video, I'm a med school student with a histology test next week and Gaucher's disease is one of the conditions we studied in class

great information, really helped me

[KroegerFan44]

You're very welcome! I'm glad you found my video helpful and it's good to hear that it's fulfilling it's purpose.

I have another video on Gaucher disease if you need any more info.

[Ghazafree]

thanks for this vdieo really.. alot of great info.. thanks alot

[KroegerFan44]

It's no problem, really. I'm just trying to raise awareness of this disease. Hopefully, I'm doing a good job. :)

Thanks for the comment and I'm glad you enjoyed my video!!!

[Ghazafree]

oh really great Job i liked ur video ur doing great job...

all ppl should know more about Gaucher im glad that we have ppl like u to make these videos :)

take care

[KroegerFan44]

Well, thank you! You're very kind and I truly value your compliments!!! :D

[Sexyvanian]

plz tell me if there is a cure for this?

[KroegerFan44]

Cerezyme therapy is not a cure for Gaucher disease; that is, it does not correct the underlying genetic defect. In order to continue to benefit from the treatment, symptomatic patients must receive intravenous infusions for the rest of their lives.

Oh, and if you don't mind I would really appreciate it if you'd rate my video. Thanks! :D

[gasstationinnovi]

i have this

[KroegerFan44]

I'm sorry to hear that.

I hope it all turns out well for you.

[KroegerFan44]

People aren't aware of all the genetic diseases out there which frankly is both sad and pathetic...How many people are ill and can't find an answer, how many people are being treated for the wrong diagnosis, or worse how many people think they are fine despite certain issues? If there were more awareness there would be more patients.

[KroegerFan44]

Genzyme charges per unit and then the hospital charges for whatever the hell they want so it usually averages around $82,000. I realize I'm being overcharged but like I said before I have no choice in the matter.

[KroegerFan44]

That is a very good question. If anything I wish that people who have genetic diseases had clinics with specialists who actually knew what they were treating. Take cancer patients for example, they have thousands of treatment centers with doctors and nurses who specialize in that field, and St.Judes that children with cancer my age and younger get their healthcare for free...

[KroegerFan44]

There should be programs like this for genetic diseases. I'm forced to get my treatment from a cancer treatment center. They try but it's just not their field of expertise

[Laredo2047]

oh, man...I'm sorry...I hope you get better.

[KroegerFan44]

Haha! Thanks I appreciate that...but I'm as good as I'm gonna get, Cerezyme is a treatment not a cure.

[nottavailable]

Good Job, I hope more will watch, learn and help support the research to prevent this disease from robbing life from our friends and families.

[KroegerFan44]

Thank You! :D

Well, thats what I'm hoping for too. People need to know about these diseases.

[drmdk]

Great Video

DrMDK

[KroegerFan44]

Thanks! I'm glad you enjoyed it!

[LUVtheUTube]

Or you can contact

Micheele Mason at Genzyme

1-800-745-4447

Then Press option# 0

Ext. 16494

[KroegerFan44]

Awesome! Thank you so much!!!!

[LUVtheUTube]

Mayo Clinic Arizona

1-800-446-2279 (toll free) between 8 a.m. and 5 p.m. Mountain time Monday through Friday.

[LUVtheUTube]

My son was diagnosed in 2001 at age 6 with type 1 Gauchers, He is now 14 yrs old and not anything can stop him. He has more activities going on in his life then 3 sets of twins.. His diagnoses came from the MAYO Clinic. Ask your DR. about haveing a liver biopsy done and foward some of your Liver sample to them. The Mayo Clinic will also keep your sample in the frozen archives to test with any new drugs avail. Hope THis Helps

[KroegerFan44]

Thank You! I've been wondering if there was some kind of program like this.

Is this The Mayo Clinic in Arizona?

[bennettscreekcheer]

my sister is suspected of having gauchers, but we aren't for sure. what were your symptoms?

[KroegerFan44]

Well, I used to be anemic so I was always tired, I had always had an enlarged spleen...it had gotten to the point that it was even painful to lay on my left side, my liver was only beginning to become swollen so by the time I was diagnosed it was only slightly enlarged, I had trouble with clotting and would get severe nosebleeds,

[KroegerFan44]

(these symptoms were all resolved with cerezyme infusions) but the worst symptom is bone pain, which I still have...but you have to understand that this disease varys from person to person, I think it's because of all the different genotypes. So I hope this helps and I wish you and your sister all the best!

[Gaucherskid]

hey, do u have gauchers?

I actually just got diagnosed.

I'm thinking of making a video 2.

If u do have the disease I would at least like to email a little bit.

[KroegerFan44]

Yeah I have type 1 gaucher.

[TravelToFindTheCure]

stay strong and keep up the good fight.

[TravelToFindTheCure]

Hope all turns out well for you guys.

[KroegerFan44]

Thank You! I really appreciate that!