hi everyone...not sure if this was posted or emailed to you...so i
wanted to send it out again!  if it si a repeat sorry!

D


*************
hi everyone!

first let me begin by apologizing!  i have not paid much attention to
you and the group lately!  life has a way off stirring up
whirlwinds...and i had some trouble with my yahoo account...long
story, but i couldn't log in for a long time....

i've been working at the club site...i'm sorry that there were some
negative...spam posts...i've erased them, and i think i've fixed it so
it won't happen again...i also got rid of some bad links...did some
maintaince...

welcome to any new members that may have joined since i've been MIA...

so, let's start fresh!  i'm back...and hope i haven't offended to many
of you!

my mom (SD for 20 years) is doing well...i think the last time i was
here was when we just found out she had stage 1 breast
cancer....sigh...thank god that all went well...she had a masectomy,
they watched her like a hawk, all is well....SD included...and is
cancer free!!  right now the only wrinkle she seems to be having is
some low potassium...more blood work tomorrow...may have been just a
fluke...

so, i hope you are all well...and invite you all to post and "let me
have it!"  i really am so sorry...it's not like me to be gone for so
long....lots happening....dealing with the breast cancer...my BIL is
in iraq....and through a zillion other life events into the
mix....sigh...don't mean to complain.....

so....let me know how you all have been...how are the SDer's doing?
actually...i have an 18 year old friend who has all the signs and
symptoms of SD...waiting for final test results...she is scared...and
freaked out...when things are confirmed...i may be asking for advice
and support that i can pass along to her...

hope that everything is going well, adn once again...i'm sooo sorry!

diane    (blue-eyes-1012)

Hi everyone! Hey I was wondering if anyone has heard from Cheryl
lately? I would really like to know how her sister-in-law Ann is? Can
anyone help.

Thanks

Renee

Cheryl,

HI, I'm Tammy, Greg's wife.  I was just checking email
and ran across your reply.  Every time I hear Buddy
Doolies story it just brings me to my knees.  He is so
thankful to be alive he just wants to help everyone
that he touches..as I'm sure we all would if we had
the results he had.  Greg and I had our own results,
not as dramatic as Buddy, but just as great for us.  I
am 39 with 5 kids, and work as a Registered Nurse as I
have for 13 yrs.  I have arthritis in my shoulder and
chronic fatigue symptoms (was never diagnosised, but
seem to have lived in a brain fog for years).  Greg
has cluster migraines and sever sinus and allergy
issues.  For us, within 6 wks (at different times)
these issues have been resolved. As a RN, I love the
idea of not putting all those drugs in  my system.  We
are taking RELIV (have you heard of it?) its a
balanced nutritional formula that goes to the cellular
level and allows the body the building blocks to
repair its self.  Anyhow, I would love to share the
details, and Buddy enjoys sharing his story, so we can
do a three way call with Buddy so you can see EXACTLY
what he did.  If your interested just email me your
phone number and we can set that up, or if your not
comfortable with that, call me and we will go from
there.  (I do have a calling plan for Canada, so I can
call for only a few  cents a minute)  It was nice
talking to you, hope all is well with you!

Tammy
--- "Cheryl K." <cak2170@...> wrote:
> Greg,
> I definitely want to know what they have been doing.
>
> Cheryl
>
> Greg Murphy <gamurphy64@...> wrote:
> Eating and getting what the body needs is the single
> most imoportant thing we do for our bodies.  How
> many
> of us eat everything from every food group everyday?
>
> That was develeoped over 30 years ago to rid off
> rickits and scervy.  Well the statistic is 80% of
> all
> Diseases stem from poor nutrtion.  Fact.  I
> personally
> know two people that come to mind that have
> scleroderma.  One lady had it so bad her skin would
> peal just from laying her head on her pillow or
> wiping
> her face with a towel.  Her skin is now so vibriant
> you would not even reconized her if you knew her
> before.  The man I know had the full body envolvment
> that effects the orgains.  He no longer needs his
> wheel chair and is about 90% pain free and was told
> he
> now will live a long life.  Let me know if you would
> like to know what they have been doing??
>
> Greg
>
> --- CHERYL <cak2170@...> wrote:
> > hello to everyone.  My sister-in-law (Anna) has
> > limited
> > scleroderma.  She is quite sick with it, ulcers on
> > her fingers,
> > severe raynaud's symptoms.  She doesn't eat well,
> > eats a lot of junk
> > and gets no exercise.  She also smokes.  Is there
> > any benefit in the
> > pain she suffers if she is eating  better and
> quits
> > smoking?  Thanks
> > for the help.
> >
> >
>
>
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Greg,
I definitely want to know what they have been doing.

Cheryl

Greg Murphy <gamurphy64@...> wrote:
Eating and getting what the body needs is the single
most imoportant thing we do for our bodies.  How many
of us eat everything from every food group everyday?
That was develeoped over 30 years ago to rid off
rickits and scervy.  Well the statistic is 80% of all
Diseases stem from poor nutrtion.  Fact.  I personally
know two people that come to mind that have
scleroderma.  One lady had it so bad her skin would
peal just from laying her head on her pillow or wiping
her face with a towel.  Her skin is now so vibriant
you would not even reconized her if you knew her
before.  The man I know had the full body envolvment
that effects the orgains.  He no longer needs his
wheel chair and is about 90% pain free and was told he
now will live a long life.  Let me know if you would
like to know what they have been doing??

Greg

--- CHERYL <cak2170@...> wrote:
> hello to everyone.  My sister-in-law (Anna) has
> limited
> scleroderma.  She is quite sick with it, ulcers on
> her fingers,
> severe raynaud's symptoms.  She doesn't eat well,
> eats a lot of junk
> and gets no exercise.  She also smokes.  Is there
> any benefit in the
> pain she suffers if she is eating  better and quits
> smoking?  Thanks
> for the help.
>
>


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[Non-text portions of this message have been removed]

Eating and getting what the body needs is the single
most imoportant thing we do for our bodies.  How many
of us eat everything from every food group everyday?
That was develeoped over 30 years ago to rid off
rickits and scervy.  Well the statistic is 80% of all
Diseases stem from poor nutrtion.  Fact.  I personally
know two people that come to mind that have
scleroderma.  One lady had it so bad her skin would
peal just from laying her head on her pillow or wiping
her face with a towel.  Her skin is now so vibriant
you would not even reconized her if you knew her
before.  The man I know had the full body envolvment
that effects the orgains.  He no longer needs his
wheel chair and is about 90% pain free and was told he
now will live a long life.  Let me know if you would
like to know what they have been doing??

Greg

--- CHERYL <cak2170@...> wrote:
> hello to everyone.  My sister-in-law (Anna) has
> limited
> scleroderma.  She is quite sick with it, ulcers on
> her fingers,
> severe raynaud's symptoms.  She doesn't eat well,
> eats a lot of junk
> and gets no exercise.  She also smokes.  Is there
> any benefit in the
> pain she suffers if she is eating  better and quits
> smoking?  Thanks
> for the help.
>
>


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hello to everyone.  My sister-in-law (Anna) has limited
scleroderma.  She is quite sick with it, ulcers on her fingers,
severe raynaud's symptoms.  She doesn't eat well, eats a lot of junk
and gets no exercise.  She also smokes.  Is there any benefit in the
pain she suffers if she is eating  better and quits smoking?  Thanks
for the help.

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the sclerodermafriendsandfamily
group.

   File        : /Looking for Mr. Right?
   Uploaded by : mihecimapu3691
   Description : view thousands of successful men

You can access this file at the URL

http://groups.yahoo.com/group/sclerodermafriendsandfamily/files/Looking%20for%20\
Mr.%20Right%3F

To learn more about file sharing for your group, please visit

http://help.yahoo.com/help/us/groups/files

Regards,

mihecimapu3691

Hello I have a friend that scleroderma that was full body involvement
and has now been told he will live a long life due to the products he
has been on now for 1 year.  If you want more information or would
like to speak with him please call us.  All I know is results were
life changing from being in a wheel chair to now walking without
pain.  Will this help you I don't know but after seeing this man
change I can not say something about it.  My wife is an RN and just
can't belive the results that lots of people have gotten with all
forms of auto immune diseases.

Greg & Tammy Murphy
(636) 390-9827

hi everyone!

first of all let me say that i'm sorry i have been so MIA lately, i
do try to keep up with the readings, but don't always get a chance to
respond!  hope you are all doing well...

for those of you who don't remember...my mom has sd...will be 20
years in Oct.  external...fingers, toes...raynaud's/crest....

well...we got some disturbing news today.  a breast biopsy came back
positive for breast cancer!  sigh....

i'm wondering if anyone out there can help...i'm going to post this
message on all the boards i can think of....

they offered 2 options....lumpectomy with radiation...or a masectomy
with chemo IF it has spread to lympnodes...(sorry for the
spellings!)  they said that sometimes a oncologist won't do radiation
on SDers....so we may need to go the masectomy route, which seems
like what mom tends to be leaning towards...

it was caught VERY early....it barely showed up on the mamo. or the
ultrasound, so that seems to be the good news.  and they seem to
think it hasn't really spread.  but we don't know for sure.

has anyone with SD gone through this?  is there info somewhere about
breast cancer and SD....i haven't checked anywhere yet....making the
boards my first stop....

kinda shocking!  no one was really expecting this thing as big around
as a pencil would turn out this way....

i'd appreciate your help if you can....you can e-mail me seperately
if you want....blue-eyes-1012@... just put something to do with
SD inthe subject line in case i don't recognize the name and think
it's spam.....

thank you all in advance....

Diane

Valerie Yarborough is the first African American to write about her
experience with scleroderma!  She sends this note about her upcoming
book:

My book, "Angel With A Broken Wing:My Journey Into Healing" is due
for release in about 3 weeks. You may take a glimpse at it now by
going into www.1stbooks.com then select coming soon, put my name in
the author box and pull up information and an exerpt. Tell all your
friends and relations even your enemies about it, and look back at
the site again in about 3 weeks to order your copy.
Valerie A Yarborough - valamina@...

Congratulations Valerie!

At Dr. Lehman's workshop, titled "Update on Juvenile Scleroderma,"
parents and children will get the most up-to-date information about
localized and systemic scleroderma.

A better understanding of the biological process of scleroderma,
coupled with the latest medication, therapy, and research
information, will enable parents to be better-informed and more
effective partners in their children's care.

http://scleroderma.org/news/news2003/news2003samanthasdoc.htm

What does this have to do with anyone that has
scleroderma?????

--- andyzhang_12 <andyzhang_12@...> wrote:
> Ready to find someone special?
> You have the chance to meet other quality large
> singles today among
> our millions of active members. Join now to find
> romance, friendship
> and fun.
> http://www.LargeFriends.com/i/6
>
>


__________________________________
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Ready to find someone special?
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Coming Soon!!
National Conference: June 21 -June 23, 2003
Capitol Hill Day: June 24, 2003

Hilton Alexandria Mark Center
5000 Seminary Road
Alexandria, VA 22311


The 2003 Conference Booklet and Registration Form are in the mail!


Can't wait for the Post Office?

Register today!
Go to our website, www.scleroderma.org, and read all about the
upcoming conference.
While you can't actually register online, you CAN print the
registration form from our website and put it in the mail today.
Or you can call the national office at 1-800-722-HOPE and register
over the phone!

Make your hotel reservations soon!
To get our special room rate you must make your hotel reservation
before MAY 2o!
(Please remember to mention the Scleroderma Foundation to receive
our special rate of $115 per night!)
To make your hotel reservations, please call 1-800-HILTONS.

Book your travel early!
Save money by making your travel arrangements soon! Special airline
discounts are available by using our travel agent.
(To take advantage of available discounts, please mention the
Scleroderma Foundation when booking your tickets.)
To purchase airline tickets, please call Passage International at 1-
800-420-7908.


*****Please Note!! The phone number for our travel agent was listed
incorrectly in the Conference Booklet.
To reach Passage International, please dial 1-800-420-7908.*****


PLEASE FORWARD THIS EMAIL TO ANYONE YOU THINK MIGHT BE INTERESTED IN
ATTENDING THIS YEAR'S CONFERENCE!!

The Scleroderma Foundation is a 501(c)(3) national nonprofit
organization serving the interests of persons with scleroderma. The
Foundation's 26 chapters and 120 support groups nationwide help to
carry out its three-fold mission of support, education, and
research. The Scleroderma Foundation is the leading nonprofit
supporter of scleroderma research - funding over $1 million of new
grants each year to find the cause and cure of scleroderma. Website:
www.scleroderma.org. Toll-free number: 800-722-HOPE.

It's Cathy again.. I just realized I made an error in
my email address... it is SynHergy@.... I forgot
the "H"
--- annette372001 <annette372001@...> wrote:
> HELLO!! Im new here...Im a female Systemic
> Scleroderma patient with
> Raynaud's phenomenon and polymyositis . I was
> diagnosed
> when I was 21 yrs old....Im now 40 yrs old. Ive
> lived through a lot
> of ups and downs and have learnt much through
> determination of will
> and faith. If anyone wishes to email me for my
> thoughts or advise
> please feel free to do so and Ill help however I
> can.
>
>


__________________________________________________
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Hi Annette,

I too, have Systemic Scleroderma along with Raynaud's,
and then the minor list goes on.  I am 49 and was
diagnosed three years ago.  Although, the symptoms
plagued me for years prior to that, I just didn't have
a name.

You learned of this disease at a very young age and
have been dealing with this for a long time. It is
interesting to know that sixteen years ago, some
doctor... somewhere... was able to give you a correct
diagnosis.

I am just now learning that I need to start reaching
out to others for words of wisdom in dealing with this
illness.  I am generally a person who deals with
things head on.. but this threw me for a major loop.
I didn't want this... therefore.. if I didn't talk
about it.. it would go away... silly me  :)

It would provide great comfort to me to share thoughts
through email with you, and I too would like to be a
sounding board for you. This is a disease that few
people understand... and only those that have it truly
understand.

You can write to me at Synergy@...

I look forward to hearing from you!
God Be With You,
Cathy


--- annette372001 <annette372001@...> wrote:
> HELLO!! Im new here...Im a female Systemic
> Scleroderma patient with
> Raynaud's phenomenon and polymyositis . I was
> diagnosed
> when I was 21 yrs old....Im now 40 yrs old. Ive
> lived through a lot
> of ups and downs and have learnt much through
> determination of will
> and faith. If anyone wishes to email me for my
> thoughts or advise
> please feel free to do so and Ill help however I
> can.
>
>


__________________________________________________
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Please share this information!

The Scleroderma Foundation is organizing nationwide walkathon events
called "Stepping Out to Cure Scleroderma" in the US starting this
year.  If you've never participated in an event like this, it's a
great way to raise awareness and to feel the support of your
community.  Your friends and family will love the opportunity to get
involved, too.  Most of the walkathons are planning to have family-
oriented activities available to make it a great day-out for parents
and kids.

Find a city close to you in the list below and email the contact to
get more information or to volunteer, or visit the SF website for
more info at http://www.scleroderma.org

Washington D.C. - June 1st - Carol Sodetz - carolsod@...
Chicago Area - June 15 - Greg Marion - gmarion@...
South Bend Area - tentative - Laurie Farris - jfarris762@...
Dartmouth, MA - June 1st - Kai Souza - Kailene.Souza@...
Detroit area - June 1st - Joan Provizer - joanp@scleroderma-
michigan.org
Minn./St. Paul - June 1st - Tammy Ryder - sfmc@...
Duluth - June 1st - Cindy Leider - HomestedBound141@...
Omaha - June 1st - Barb Heenan - omahaSSG@...
Buffalo - June 8th - Laura Henry - ghenry@...
Durham - June 1st - Bill Steinbach - stein022@...
Columbus - June 1st - Amie Yaussy - sfohio@...
Portland - June 1st - Lisa Cogan - Lisa.Cogan@...
Eugene (evening?) - June 1st - Gwen Schubert - sforegontrail@...
Nashville - June 7th - April Simpkins - ssdblessed@...
Houston - May 4th - Phyllis McCullough  - pamteddybear@...
Salt Lake City - June 28 - Judy Bradshaw - j.l.bradshaw@...

HELLO!! Im new here...Im a female Systemic Scleroderma patient with
Raynaud's phenomenon and polymyositis . I was diagnosed
when I was 21 yrs old....Im now 40 yrs old. Ive lived through a lot
of ups and downs and have learnt much through determination of will
and faith. If anyone wishes to email me for my thoughts or advise
please feel free to do so and Ill help however I can.

want to take this opportunity to welcome all of the recent newcomers!
  Hope you find some help and comfort from our group.

just wanted to send out a note and let you all know that i haven't
forgotten about you!  life has been busy as usual here...holiday
season was a blur, but a nice one!  We are getting ready to move, so
life has been a flurry of boxes and packing...picking paint colors,
wallpapper, curtains....exciting, but a lot of work.  we should be
ready and moving in about 6 weeks....sigh....

anyway...hope you all are doing well....hope everyone is staying
warm...i know my mom hates this winter cold....her doc doesn't like
her going out in it if she doesn't have to.  but she has been doing
pretty well lately, nothing major....all seems ok.  she had a dr.
appointment recently and thigns look ok.  only concern was she is due
for a colonoscopy (sp?) but hte doc isn't sure if he'll have her do it
or not....cause he has her on cumadin (sp?) and there is a risk if she
comes off if it she could have a stroke, so for a routine test he
isn't worried...if she was having problems in that area then he would
think about it....but for now he'll probably leave well enough alone....

plus my mom's dr.'s are in scranton Pa, you all probably heard about
the dr. wanting to pull out cause of malpractice stuff.....so far her
main dr. seems to be staying....but one of her other ones that she
sees once a year is thinking of closing up and laeving...so we are
hoping that it all gets worked out....

well, just wanted to let you know that i may not always get a chance
to  to write, but i thnk of you all always...

let me know if there are any questions or anythign i can help
with....take care...hope to talk to ya soon...

Diane

hi, I'm new to this group and my Pastor's wife who is a dear friend
has taken ill due to scleroderma, she has been unresponsive for
almost 40 days now. I'm just looking for comfort from someone who
knows about scleroderma. Thank you!

Yesterday I found out that one of my clients/friends has been
diagnosed with scleroderma.  Her name is Dana and I am her
hairdresser.  But we have become very close over the past few years.
She hasn't even talked to me herself about it yet.  She just found
out less than 2 weeks ago.  One of her family members (also a client)
informed me.  Dana is an O.R. Nurse.  And I am sure that she is
making sure she is completely unshielded from all the possible
effects of this condition.  I KNOW she would demand to be informed of
EVERY detail.  She is a tough cookie.  I want to know, please, how
can I help her level of comfort or state of mind, or what can I do to
see her through this?  I want to be a help to her, not insult her
pride or independence.  I am so scared for her.  Tell me how to be a
positive force for her during this.  I have been researching
Raynaud's and Systemic scleroderma like crazy, so I am very aware of
the expectations of what her body will go through.  What can I do to
make it even a tiny bit easier for her?  Please email me:
tsclay@...
God bless you all

I don't think I have a salty taste in my mouth.  I have some kind of
taste that I can't describe.  Brushing my teeth, how many times
seems to be the only way to get rid of it.  How long have you had
scleroderma?
--- In sclerodermafriendsandfamily@yahoogroups.com, rpmkayak
<no_reply@y...> wrote:
> I'm curious...Have any of you ever had a problem with a nagging
salty
> taste in your mouth. I've been like this a time or two and can't
seem
> to get enough to drink. I am drinking lots of water, brushing my
> teeth, but the taste doesn't go away.
>
> Debbie

I have just found your site.  I do not know much about computers or
these groups.  Please have patience.  I am a new scleroderma
sufferer.  I was just diagnosed in April '02.  Evidentally I've had
it since Oct.01.  I believe I have a mild case, according to the
little I know of the disease.  I think I may have just started the
second stage, the second year.  I don't know what else to say right
now.

Thank you for replying. I have contacted the foundation and got a whole elvelope
full of information. We have sent for some of the books also.
  Molly King <ldyoutlaw2001@...> wrote:
Hello I don't know if I can be of much help but I will try.  I am so sorry it
has taken me so long to get back to you.   I have been having to run back and
forth to my mothers to help with her as she is getting worse by the day.  If you
will, just let me know some of the questions that you may have and I will see if
I can help you out.  And always remember to keep your head up and pray.  This
disease is a very hard one to watch someone with and all you can really do is be
there as a friend and caring person.  Again just ask me and I will try to help. 
Let me know what kind or what stage it is in and I will do the best I can.
charm_mac2000 <charm_mac2000@...> wrote:Hi. I work in a nursing home and
one of our patients has scleraderme.
We would like some information on this. Anything would be a help.
Thanks


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[Non-text portions of this message have been removed]

Debbie,
I don't have this disease but my mother has had it for over 23 yrs now.  As far
as her having that problem yes she does and she drinks water all the time as
well as just about anything else she thinks might help.  There isn't much that
can be done for her but to answer the question again, yes she does have the same
problem.  She also tries some peppermint hard candy and those spice drop
candies.  She says they help a little for just a short period of time.  If there
is anything else I can maybe help you with just e-mail me and I will do my best.
My prayers are with you.
  rpmkayak <no_reply@yahoogroups.com> wrote:I'm curious...Have any of you ever
had a problem with a nagging salty
taste in your mouth. I've been like this a time or two and can't seem
to get enough to drink. I am drinking lots of water, brushing my
teeth, but the taste doesn't go away.

Debbie


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[Non-text portions of this message have been removed]

Hello I don't know if I can be of much help but I will try.  I am so sorry it
has taken me so long to get back to you.   I have been having to run back and
forth to my mothers to help with her as she is getting worse by the day.  If you
will, just let me know some of the questions that you may have and I will see if
I can help you out.  And always remember to keep your head up and pray.  This
disease is a very hard one to watch someone with and all you can really do is be
there as a friend and caring person.  Again just ask me and I will try to help. 
Let me know what kind or what stage it is in and I will do the best I can.
  charm_mac2000 <charm_mac2000@...> wrote:Hi. I work in a nursing home and
one of our patients has scleraderme.
We would like some information on this. Anything would be a help.
Thanks


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[Non-text portions of this message have been removed]

I'm curious...Have any of you ever had a problem with a nagging salty
taste in your mouth. I've been like this a time or two and can't seem
to get enough to drink. I am drinking lots of water, brushing my
teeth, but the taste doesn't go away.

Debbie

hi everyone...

just wanted you to know that this file has been deleted!!!!
there is no advertising, or junk mail!

hope everyone is doing well...hasn't been much activity lately!

have a great thanksgiving if i don't talk with any of you before then!

love,
D





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http://www.scleroderma.org
Scleroderma Foundation Chat
Our next online Chat: TODAY! Weds., Nov. 13, 2002, 9:30-10:30 p.m.
Eastern Time. Special Guest: Sampath Prahalad, M.D., Division of
Immunology & Rheumatology, Department of Pediatrics, University of
Utah School of Medicine.
Topic: "Juvenile and Localized Scleroderma."
Dr. Prahalad is an instructor as well as a researcher and clinician.
He is currently the co-investigator of the Intermountain States
Database of Childhood Rheumatic Diseases. This program has enrolled
over 700 children to date.
Dr. Prahalad was a speaker at our 2002 National Conference and has
given time to our Salt Lake City Support Group. We are fortunate to
have his support and participation. Next Open Chat (no guest): Weds.,
Nov. 27, 2002, 9:30-10:30 p.m. Eastern Time.