Today February 28th is Rare Disease Day Worldwide

passline

passline

Legendary Member
Joined
18 October 2005
Messages
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Location
Alpine, New Jersey
Last January I was diagnosed with Wegener's Granulamatosis a rare auto-immune disease that attacks vital organs in the body. As many of you know, having seen me around at events, I am in medication induced remission and one of the luckier ones. There are countless other "rare" diseases that go undiagnosed be the medical community as our own docjohn can tell you. He mentioned to me last year that he heard about Wegners only once in medical school and was quickly forgotten until I told him. There is just not enough funding as with cancers and heart disease so people are dying from rare diseases at an alarming rate. NORD was formed only a few years ago but needs help.

Please watch the video :

http://www.rarediseaseday.org/country/us/united-states
 
pbassjo said:
Good to hear that you're on the mend. You are a wonderful guy Rich.
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Thanks Joe. I'll be fine with the best docs at Columbia Pres. My heart goes out to all the people with rare diseases that go undiagnosed and are in hospitals where the docs mis-treat some of these diseases based on only the correct x-rays. Docjohn knows what I mean.
 
Happy to hear that you are ok Rich.....this is the first that I have ever heard of such a disease.

Your Drinking Buddy during the Japanese trip.:biggrin:

Bram
 
Glad to see the treatments have worked!
 
passline said:
Thanks Joe. I'll be fine with the best docs at Columbia Pres. My heart goes out to all the people with rare diseases that go undiagnosed and are in hospitals where the docs mis-treat some of these diseases based on only the correct x-rays. Docjohn knows what I mean.
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Funny you should mention. I just finished writing a paper on the overdiagnoses of breast cancer and how the mammogram shouldn't be the holy grail of cancer detection. So many people suffer from preemptive treatment of presumed "cancerous lumps". Great cause. All the best with your treatment passline.

-Danny
 
Supra TT said:
Funny you should mention. I just finished writing a paper on the overdiagnoses of breast cancer and how the mammogram shouldn't be the holy grail of cancer detection. So many people suffer from preemptive treatment of presumed "cancerous lumps". Great cause. All the best with your treatment passline.

-Danny
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Thanks Danny, I'm fine. I just needed to drag it out so that Jeanne would allow me to get a Tesla S for our daily driver. :biggrin::biggrin:

ps: I judge how the treatment is going by how fast I can drive the NSX .............. now up to 90mph
 
passline said:
Thanks Danny, I'm fine. I just needed to drag it out so that Jeanne would allow me to get a Tesla S for our daily driver. :biggrin::biggrin:

ps: I judge how the treatment is going by how fast I can drive the NSX .............. now up to 90mph
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now there's an awesome unit of measure lol
 
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