Re: Re: Lumping of the diseases [2 Attachments]

[Guest guest]

I've just been found to be Vitmin D deficient & advised to take a

supplement. This is an irony since I live in such a sunny climate BUT

I am a Melanoma Survivor & hide from the Sun . I wear Sunblock on my

face, neck & back of my hands every day & use a 30+ sun brolly when I

walk into town. I wear a hat & use a long sleeved shirt everytime I go

out into my garden.

I also find these days that my skin reacts instantly to the sun &

turns bright red, hot & itichy. Hard to believe I used to be Tanned

from Top to Toe with narry a swimming costume mark to be found upon

my person anywhere!

Vit D is very important in preventing osteoporosis since our bodies

cannot utilise Calcium without Vit D. (it Is found in food but the

best source is sunlight on our skins 15- 20 mins per day)

Catch 22..so I now take a high quality liquid supplement in my cereal

with FULL Cream milk every morning...Vit D is one of the Fat soluble

Vits & so wouldn't be absorbed so well using skim Milk.

My ENT specialist was the one who decided to have it checked ..he's

been reading up on Vit D deficiency & says it's only now being

discovered just how many body systems it can play havoc with. (His

wife is a Rheumy & they put their heads to gether on all sorts of

stuff!)

Cheers,

in Oz

> Wow Bruce, you have really handed me a loaded gun .

> My research (yeah, I have done some ) indicates that sarcoid is generally

> found in the lungs in the majority of cases. Many of the people on the

> board do have lung involvement, but what I find interesting is that hardly

> any speak of fibrosis! Most are confused and scared and in pain and have to

> contend with doctors who don't know anything about this disease. I believe

> that most of those who post have other types of sarcoid---skeletal, neuro,

> other organs and skin.

> Now as to the vitamin D problem I am still quite confused with it so I'll

> just attach a post from the board that explains it far better than I could.

> My pcp always tells me I am Vit D deficient and wants me to take

> supplements. My pulmo tells me NOT to take supplements until I see the

> specialist in ton.

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> Roxanne, 59, South Carolina

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> 2006 Asthma/ PF

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> 2008 PF/ Sarcoidosis/Gerd

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> I pray you enough.....

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> Subject: Re: Lumping of the diseases

> To: Breathe-Support

> Date: Saturday, January 2, 2010, 7:42 PM

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> Roxanne

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> While everyone with Sarcoid does not have lung fibrosis, I have read

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> numbers estimating as high as 90% do or will. How does this compare with

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> what you see on the Sarcoidosis forum?

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> As someone with a Vitamin D shortage I am curious about your long story

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> on Vitamin D.

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>> From: Bruce <brucemoreland@ gmail.com>

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>> Subject: Lumping of the diseases

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>> To: Breathe-Support@ yahoogroups. com

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>> Date: Saturday, January 2, 2010, 10:29 AM

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>> I found it interesting to read some more date published by

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>> University of Pittsburgh ILD center. Here are the patients who went to

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>> their center from January 1-October 14, 2009.

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>> Now, tossing out some more interesting information (at least to me)

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>> that is a breakdown of the patients who went to the University of

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>> Pittsburgh ILD center from January 1-October 14 of last year.

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>> IPF UIP 574

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>> Sarcoidosis 502

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>> PF Rheumatoid Condition 277

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>> ILD Ruled Out 179

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>> Under Evaluation 179

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>> Hypersensitivity Pneumonitis 51

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>> PF of other Causes 49

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>> Other IIP's 44

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>> Pulmonary Hypertension 33

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>> Occupational Diseases 26

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>> So, only 30% of the patients had IPF UIP.

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>> I'm surprised we don't talk more here about Sarcoidosis and that makes

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>> me think either they're going to their own forum and/or its being

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>> underdiagnosed by many doctors. Also note that of the patients sent to

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>> the ILD center approximately 10% were determined not to have an ILD

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>> another 10% haven't been determined yet.

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