Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Welcome Deon, I'm sure you'll get a lot from being part of this wonderful group. I've only been a member since last August & am totally so grateful for all the support & wisdom on this Board. I'm quite shocked that we've recruited yet another really young person with PF...there are now quite a group of you. I'm 57 & feel that that's a pretty 'average' age to get this diagnosis but 37! Regardless of everyone's age we all learn heaps from each other & about the particular issues facing each age-group. Regards, in Australia (Aka in Oz) IPF: Fibrotic NSIP/UIP??? Reynauds' May 2007 >> Hello everyone,> I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. > > Boy what I would give to feel normal again.> > Deon, Lithonia, Ga> > > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Actually the average ages...even though there are many far younger and older than the averages....do vary widely based on the form of PF. Last chart I saw for mean ages of diagnosis were: UIP/IPF 57 NSIP 49 BOOP 55 RB-ILD 36 DIP 42 LIP 50 However, we do see all extremes here and I also think it varies greatly depending on whether its the primary or secondary diagnosis, just PF or co-morbidity. Like everything else associated with this disease though, all statistics are useless. > > > > Hello everyone, > > I'm new to the group, but was very excited to know that such a support > group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I > was diagnosed with Mixed connective tissue disease three years ago, and > pulmonary fibrosis in 2006. At this time, the fibrosis has been > difficult, when I laugh I cough, when I talk too long I get winded, and > as you all know, simple things like showering and curling my hair is a > task. > > > > Boy what I would give to feel normal again. > > > > Deon, Lithonia, Ga > > > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Deon, What a lovely name. Oh how young you are!!!! Welcome to the group there are many young people here and many not so young ones too. We have this miserable disease in common but we deal with many forms of it. Normal is going to change. I'm sorry to tell you that. Your new normal will develop over time. Take time to read some of the previous posts . You will learn so much about your disease and how we are all trying in our individual ways to cope. Ask any questions, express any opinions, rant , laugh and we'll be here. Welcome again, Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Deon Barron wrote: Hello everyone, I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. Boy what I would give to feel normal again. Deon, Lithonia, Ga Never miss a thing. Make Yahoo your homepage. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.2/1221 - Release Date: 1/12/2008 2:04 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Hi Deon, Welcome to our site. We love having new members, yet it breaks our hearts. Normal? This is your normal, from now on. You can enjoy life in your new normal state. Just do your best to make life joyful every day. I also have Mixed Connective Tissue Disease and developed PF in 1997. I was having trouble long before that, however. So, I am a long time survivor. Let us help you and you can help us too. We all have learned so much from each other. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hello everyone,> I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. > > Boy what I would give to feel normal again.> > Deon, Lithonia, Ga> > > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hello Deon, Welcome to our corner of the internet, but I'm sorry you need to be here. I hope you find as much help here as I have. I'm 38 and a mother of a 5y/o, have dermatomyositis and pulmonary fibrosis among others. I live in England, so it looks to you lot across the pond that I'm up really late! Love Ze xx (38) Dermatomyositis, Pulmonary Fibrosis and others, for years!>> Hello everyone,> I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. > > Boy what I would give to feel normal again.> > Deon, Lithonia, Ga> > > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hello Deon, you will find this a wonderful place and such great support and kindness, friendship. I am sorry you had to join us under these circumstances but glad you found this group! Sandie > > Hello everyone, > I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. > > Boy what I would give to feel normal again. > > Deon, Lithonia, Ga > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Deon, welcome to the group. I am so sorry you had to find us, but since you are here just know this is a great place for info and support. You have such a lovely name! I was diagnosed at age 39 with PF. I've had MCTD since I was 15. I'm now 47, and have never been " normal " in my life, so I guess I don't miss it...LOL! I'm still only on 2 lpm of O2 on exertion, so just know that this can be a slow moving disease in some folks. They don't even know how long I had it before it was found. Possibly years. Please ask any and all questions you feel the need to ask. And please share more of yourself. Nosy minds need to know.... Hugs! Babs in Texas DX NOv. 1999 with PF due to Lupus/Scleroderma...also have Sjogren's, Raynaud's, Rheumatoid Arthritis, Fibromyalgia, DM and possibly Crohn's. > > Hello everyone, > I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. > > Boy what I would give to feel normal again. > > Deon, Lithonia, Ga > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Hi Deon... welcome, although the darned disease isn't! We're glad you found us. Hang around and you'll have answers to all your questions and support for whatever you need. I feel sad when young people like yourself need to find us. There are quite a few here around your age. You'll hear from them. I'm one of the 'older' ones. I'll turn 70 this year but hate this disease as much as anyone! Hope today is good for you. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Dr. issues Hello everyone, I'm new to the group, but was very excited to know that such a support group existed. I'm a 37 yr old wife and mother of a 16 and 12 yr old. I was diagnosed with Mixed connective tissue disease three years ago, and pulmonary fibrosis in 2006. At this time, the fibrosis has been difficult, when I laugh I cough, when I talk too long I get winded, and as you all know, simple things like showering and curling my hair is a task. Boy what I would give to feel normal again. Deon, Lithonia, Ga Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
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