4 Responses to Re: [Sarcoidosis_Support] How old are we?

1. nicole_11 on 2008-11-22 02:47:17.599895

   In a message dated 9/2/2003 2:24:58 PM Central Standard Time, mcsooey@... writes:
   
   But do we have any other common
   threads as they relate to Sarcoid? Like, how old are we now and how
   old were we when we first learned we had Sarcoid? How many of us
   are male and how many of us are female? What part of the world do we
   live in, etc.
   
   My name is Joanie. I am 35 years old, and was diagnosed just about a week before my 35th birthday (earlier this year), but I believe that I have been showing symptoms of Sarcoid (especially shortness of breath) since I was about 27. They say my Sarc is only in my hilar lymph nodes in my chest at this time, so I am not on steroids or anything. I am a female. I've been married for 14 years to my husband Chris. We met as teenagers, dated our senior year in high school, then moved in together and lived together for 3 years. When we were 21 we got married, and have been married for 14 years now. We have 3 wonderful kids...a 13-year old daughter named Codey, a 10-year old son named Justin, and a 6-year old son named Wade. The kids are in 7th, 5th and 1st grades this year.
   
   I live in Oklahoma, but was born in Arkansas and lived there until I was 9, at which time my parents divorced and my mom moved to Oklahoma. So, I spent the next few years living sometimes in Arkansas with my dad and sometimes in Oklahoma with my mom. Finally, at age 15 I moved to Oklahoma for good, and met my future husband at 17, so just never went back to Arkansas to live after that.
   
   There is no history of Sarc in my family, but my dad and my grandma on my dad's side both have/had asthma. However, there are other auto-immune disorders in the family. My mom has Scleroderma and my stepmom has Multiple Sclerosis.
   
   I have 2 real siblings, 2 half-siblings and 2 step-siblings, and several nieces and nephews, none who have been diagnosed with anything more serious than allergies.
   
   Joanie

2. lakeisha4 on 2008-11-22 01:33:51.287646

   Hi Sooey,
   I agree w/Louise, it's a good time to get the newbies caught up w/the rest of us "oldies", maybe veterans is a better term. My story:
   I'm female & 50 yrs. old.
   I have Neurosarcoidosis or CNS (Central Nervous System) sarcoid; dx'ed by brain biopsy in June '95; probably had it since spring of '94. It has affected my spinal cord (permanent paralysis) and has caused swelling of the white matter of my brain (caused TIA-like symptoms), which is essentially gone now that I am on Prednisone (40mg. every other day). I don't have it anywhere else. Due to problems caused by the paralysis, I've also had to have a colostomy & an ileal conduit (urostomy) which aren't nearly as bad as most people might think they are. Sometimes yes, but mostly no problem.
   I'm caucasian, currently live in OR and was born & raised in NE prior to moving to OR in '80. I am married to a saint of a guy (Eric), have been for 16 years this coming Nov. and have two dogs (Sherman & Lacey) and one cat PC (pretty cat). No kids. God has blessed and sustained us through all the many changes this disease has caused in our lives.
   I'm starting the clinical portion (hands on care) of my RN re-entry program. Then I will have my RN license back and be able to go back to work. I'm also getting a new w/c (wheelchair) van the week of the 15th (we hope!). Once I'm back to work, I want to get my BSN and then (if I'm not dead {LOL}) I want to start working on my Master's. So, I've got a lot of future plans & intend to fulfill them.
   That's my story & I'm sticking to it! :-)
   God bless,
   Mary Ann, OR
   Hi Sooey,
   
   This is a great idea, especially for all the newbies. I don't mind sharing this information, although I might make it a bit more confusing. Hope not! Here goes:
   
   I'm femaile
   
   I am 33 years old
   
   I am caucasian
   
   I have only lived in Calfornia and England
   I was diagnosed with Sarcoidosis (after initial diagnoses of JRA) when I was 6 - although I had the Erythema nodosum when I was 3-
   I had fevers, non-productive bone marrow, enlarged spleen and liver, uvietis and minor arthritis. Sarcoidosis became the diagnoses when I had non-caseating granulomas biopsied from an exploratory surgery on my abdomen. I have had a skin biopsy as well.
   
   Later, it showed up in my kidneys
   
   I have never had it in my lungs
   
   I also have intense sinus pain (I'm with ya Ray) most of my life, as well as my brother
   
   I have had "sarcoid meninigitis" - does that mean it affected my CNS?
   
   The last 15 years, Sarcoidosis has been incredibly managable for me. Most of the problems have "gone away". However, I was diagnosed with another kidney ailment in October that "they" aren't sure is related.
   
   Love Louise
   
   I am a female.
   I am 53 (yikes) years old.
   I was 53 when I recieved my diagnosis.
   My sarc is in my lungs & lymph nodes.
   I am caucasian.
   I live in the north east, U.S....CT
   I did not go to the Dr. with symptoms of sarc, it was discovered
   through abdominal x-rays, in which, they could see the bottom of my
   lungs.
   I don't know anyone else with sarc...only YOU!
   I hope this is not too personal for some of you. This Sarcoidosis
   stuff is so new to me and I find that I have many questions.
   I hope where you are, it is sunny, warm and wonderful...it's a little
   cold and wet here in CT.
   My best to you,
   Sooey
   
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3. mellie_170 on 2008-11-22 18:49:53.080566

   Hi Sooey, I can tell you that out of our 80 members we have approximately 18
   males.
   I once asked members where they grew up and ,of the ones at the time that
   answered, it seems that there were many from the south and midwest. I was
   born in New York but from the age of 6 was raised in Wisconsin witlh the war
   (World War 2) years in Louisiana. I have lived in So. Calif. since I was
   16.
   I was diagnosed about 7 years ago but I had been searching for a diagnosis
   for years and once I got it I realized I had had symptoms back to when I was
   a child. I really think I was born with it. I am 66 years old. My sarc is
   in my lungs, hilar lymph nodes and skin. I also don't know anyone with sarc
   but YOU guys. If some of you would like me to begin a poll with this
   information I would be glad to do so. Write in and let me know. You must
   realize, however, that not all members will participate so whether we will
   get enough to tell us anything is uncertain.
   By the way, we have so many new members and I haven't mentioned it in a
   while. If anyone would like to have their birthday and/or anniversary added
   to our group calendar please send me the pertinent data and I will do so. A
   notice will go out a couple of days before the event to alert everybody. If
   you like, you can send an e-card to the person. It's fun to be remembered
   on your birthday and anniversary.
   Betty

4. jenise_3 on 2008-11-23 04:49:39.444581

   I am a male (or so I've been told),
   
   I am 49, but will be 50 Smiley with tongue out emoticon in December (meaning too old for hopscotch, but not too old to cut the mustard Winking smiley emoticon )
   
   I received my first diagnosis when I was 34, but didn't affect me till I was 36). (I've always been a little slooooooooooow!)
   
   It was discovered first in my lymph glands (every single one thru-out my body, but later also found in lungs, liver, spleen, and kidneys.)
   
   I am a MUTT (name it I probably got that nationality in me Smiley emoticon )
   
   Live in North Carolina, but grew up in Virginia Beach / Chesapeake, Virginia.
   
   My sarc was discovered when I was given an x-ray for a pulled muscle in my back, then told after tests I had lymphoma, then at hospital pancreatic cancer, 8 months later I was told sarcoid.
   
   Have only met (in person) 1 other person that has sarc, and that was my wife's 2nd cousin (but she had a different form of sarc, where hers turned into tumors --like Karen Duffy).
   
   Now.................what do I win? Smiley emoticon Smiley emoticon Smiley emoticon
   
   Ray & Liz
   
   Hope everyone has a great day also. Red heart emoticon You all !!!!
   
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