RE: Re: will the testing ever end?

[Guest guest]

This is from the FSR Site on the latest research so it is not just a genetic.

1 Mar 2007

Genetics of Sarcoidosis. Semin Respir Crit Care Med. 2007 Feb;28(1):15-21. Research increasingly suggests that sarcoidosis results from an interplay of environmental and genetic factors. Although the recently completed ACCESS (A Case-Control Etiologic Study of Sarcoidosis) study was not able to definitively identify a single cause for sarcoidosis, it did yield important findings regarding familial and environmental risks that have advanced our understanding of this disease. Family clustering and differences in racial incidence of sarcoidosis support an inherited susceptibility to sarcoidosis. Siblings of patients with sarcoidosis have about a fivefold increased risk of developing sarcoidosis. In addition, two recent genome scans have been reported in sarcoidosis. One in African Americans reporting linkage to chromosome 5 and the other in German families reporting linkage to chromosome 6. The author concludes that advances in genotyping and statistical analysis are helping to clarify the genetics of sarcoidosis. See what's free at AOL.com.

[Guest guest]

Judy, I'm a little late with this, but I wanted you to know how sorry I am that you are having such a difficult time. The edema must be so painful. And the treatment such a hassle & uncomfortable.

Now I'm going to mother you! There is no reason for you to feel guilty about your son having sarcoidosis. Even if research eventually proves that sarc can be inherited, like sickle cell anemia & other diseases, you didn't know that, right? You didn't intentionally put him at risk, right? We are just now finding that certain people may have a genetic predisposition to sarc, but even that doesn't mean it's inherited. For all we know, half the population may be at risk & different people react to different triggers, or don't react at all. At this point, there are more questions than answers. But at least someone's asking the questions. Your son has the odds on his side that he will only have pulmonary involvment & that it won't be severe, but even if he develops sarc in other organ systems, research is progressing & I believe that future sarckers (sarcoidians sounds too alien to me! And no, it's not a typo; I didn't intend to type suckers) will have better prospects, with more treatment options & more informed doctors. Your son has an ace in the hole--you! You know the system, the questions he needs to ask, when he needs to fire his doctor(s) & find someone competent. You may be his greatest asset, baby!

Now, after falling off my soapbox, here's a gentle hug for you, Judy.

(((((((((((((((((())))))))))))))))) I said, gentle, not short! Love, Rose

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: will the testing ever end?Date: Wed, 04 Jul 2007 01:35:20 -0000

I am so sorry that you had such a horrible time with your spinal tap.40 years ago I had meningitis, my head hurt so bad from my elevated spinal pressure that I begged them to do another tap to relieve the presure which they did.Hopefully if you to have another one it wount be as uncomfortable.One of the reason they do them is to rule out MS. With MS the spinal fluid contains oligiclonal anribodys. I may have not spelled that correctly.Wishing you better days.Judy in PA

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[Guest guest]

This is

interesting findings, there are 4 of us related by blood that has Sarcoidosis, I

just pray my boys don’t get it! Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of katskreations1@...

Sent: Wednesday, July 04, 2007

9:19 AM

To: Neurosarcoidosis

Subject: Re:

Re: will the testing ever end?

This is from the FSR Site on the latest

research so it is not just a genetic.

1 Mar 2007

Genetics of Sarcoidosis. Semin

Respir Crit Care Med. 2007 Feb;28(1):15-21.

Research

increasingly suggests that sarcoidosis results from an interplay of

environmental and genetic factors. Although the recently completed

ACCESS (A Case-Control Etiologic Study of Sarcoidosis) study was not able to

definitively identify a single cause for sarcoidosis, it did yield important

findings regarding familial and environmental risks that have advanced our

understanding of this disease. Family clustering and differences in

racial incidence of sarcoidosis support an inherited susceptibility to

sarcoidosis. Siblings of patients with sarcoidosis have about a fivefold

increased risk of developing sarcoidosis. In addition, two recent

genome scans have been reported in sarcoidosis. One in African Americans

reporting linkage to chromosome 5 and the other in German families reporting

linkage to chromosome 6. The author concludes that advances in genotyping and

statistical analysis are helping to clarify the genetics of sarcoidosis.

See what's free at AOL.com.