My first sarcoidosis support group meeting in NY

Last night I attended my first sarc support group meeting at Mount Sinai in NYC. I almost didn't go because it's a struggle to go anywhere (I live in NJ and it took over an hour to get there) with my dyspnea and pulmonary hypertension. I have to stop and take a rest every 20-30 feet, feeling out of breath, heart racing.

My wife insisted I go. She said it would be good for me to meet others better and worse off than me and to have others to relate to.

I had no expectations. I didn't think many people would show up. I was wrong. Almost 30 people were there and my wife was right. There were many much worse off than me, and the evils of prednisone were discussed at length. Plus, Dr. Tierstein, my pulmonary doc, attends every meeting and the 2nd half is his medical perspective after about 45 minutes of sharing.

It was a wonderful experience, much like this message board, but in real time with a whole lot of folks around to empathize with. I was near tears a few times, listening to others' ordeals.

One woman has been off prednisone since April and lost 55 lbs. Her 19 year old son was there and told everyone how crazy his mom acted at times. It brought back a flood of memories about my own experiences.

Point is, if there's a local sarc support group near you, by all means, go. If there isn't, try to form one through this board. The NYC group meets every 2 months. It was comforting to attend and I recommend it for all of you out there.

In the meantime, my prayers go out to all of you.

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I'm so glad you had such a great experience! I'm so sorry it was such a struggle for you to attend. I hope it gets easier for you in the future.

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Hey BHS that's cool that you went. I go to Mt. sinai to see my sarc/pulmonary there. (Dr. Teirstein)

Quincy I like in Teaneck why are you reluctant? I have been trying to find something in Jersey but really haven't everyone here goes to NY.

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If you guys form a group in NJ, I'll be there. It's great to meet others in the same boat and commiserate along with open, honest feelings and sharing. I live in Ramsey and can travel up to an hour to sit down.

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I've noticed the conversation about hoping for a support group in New Jersey. I want to introduce myself as the person on the Foundation for Sarcoidosis Research who works with support groups and let you know that if you are interested in starting a group, you might want to look at a post I made about how to start a group: http://www.inspire.com/groups/stop-sarcoidosis/journal/how-to-start-a-sarco idosis-support-group/

If you do decide to start a group or have any questions, please call me at 866-358-KISS (5477) or email me at jan@stopsarcoidosis.org

Jan Lugibihl, Development & Marketing Specialist

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I'm in Westfield, New Jersey and would like to be included if you do form a group. Please keep me posted as well.

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Hello to BHS and all others who are in NY. I am in Oregon but have alot of family in NY. I went back East last month and actually had a an appt. with Dr. Teirstein. I would like to ask those of you who see him what you think about him. I liked him, he was very reassuring but also a bit dismissive regarding some ot the symptoms I described saying they were not related to the sarcoidosis. And also that I would go into total remission within 2 years. That would be May of 2009. I am curious about what his discussion included during his portion of the meeting? Thanks for your time I appreciate it. a New Yorker living in Oregon......

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Yankeefan:

Dr. Tierstein is a no-nonsense, straight talking doc who wastes little time and gets right to the point. He also knows his stuff, so I trust what he says. He can be blunt and terse and has an average of 6-8 patients waiting to see him at any given time.

I bring my wife with me when I see doctors as I don't always hear or recollect what they said (more like what I wanted to hear). Another friend I know brings a tape recorder. When doctors talk to you, your emotions generally cloud the facts, especially when you're scared about your health. It's best to take notes or do something to make sense of it all later.

At the sarc support group meeting I attended the patients commiserated for about 45 minutes, then Dr. T gave a talk about pneumonia for 15 minutes. He drew pictures of lungs and airways on a chalkboard and was obviously a teacher (Sinai is a medical college). Very informative with surprising nuggets like: sarc patients don't get pneumonia any more often than those in the general population.

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I am in New Brunswick, NJ and would love to be included in any group/correspondence. Thank you!!!

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I would be in if it was on the weekend! I live waaaaaay down in Salem Co. A bit away from you guys! LOL! But I could travel up and would be interested. Going to NY for a meeting just isnt' going to cut it for me (unless it included some awesome Broadway tickets too! :<D )

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Oh and I might bring a friend who is in Trenton!!

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We're in Baltimore and if there's anyone out there who has attended a group in Baltimore, I'd love to hear from you.

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Thanks BHS, I appreciate your response. Stay healthy. I did bring my cousins with me and they took notes. You are right, I think sometimes I would like the doctors to hold my hand and pat my head but that is not reality. Especially for a Dr. like Dr. Teirstein who like you said has many patients waiting. Take care,

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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