Re: Scleroderma ?

[Guest guest]

Hello Ruth,

I have been absent from the list for a few weeks but I want to welcome you and

Jemma. Did the dermatologist say what makes him think it is scleroderma Jenna

has?  If you have not already found it, arthritis.org has some good information

in their " disease " section.  I think it is good they have given you the referral

to a rheumatologist as they will be better equipped to assess Jemma and they can

hopefully confirm or rule out scleroderma.  I do hope you get an appointment and

some answers soon so she can start treatment that can give her relief.

You said in one of your posts that you first noticed problems when Jemma was

typing and she had no flexibility in her fingers and they are rather

twisted...my daughter's fingers are a real problem for her as well...perhaps one

of the voice activated software programs for the computer would be helpful for

her?  We are in the process of acquiring one for our daughter.

Anyway, a late welcome.  Please keep us updated as you can.

mom to , 18, poly, pidd

From: Ruth <telemwill@...>

Subject: Scleroderma ?

Date: Tuesday, December 9, 2008, 7:57 AM

Jemma had an appointment this morning. Her dermatologist now

suggests

she may have scleroderma. I did call her pediatrician today to ask for

a referral to a rheumy. I am now scouring the internet for information

on scleroderma. It seems like it is taking a long time to get this

figured out. All this auto-immune stuff is a bit scary.

Ruth in TN

[Guest guest]

Some of the things he mentioned were redness around the nails, how

cold her hands felt, and a yellowish callouses on the fingers. The

positive ANA is may also be a factor.

However, he also said it could be psoriatic arthritis, or related to

connective tissue disease or, even, lupus. I haven't actually gotten a

referral yet, but I did call my pediatrician ans ask for one. My main

concern is that we keep getting bits of info related to blood work and

auto-immune stuff, but no one is actually helping us with my main

concern: her hands.

Thanks for the software suggestion. I've been wondering about that.

Ruth in TN

> From: Ruth <telemwill@...>

> Subject: Scleroderma ?

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> Date: Tuesday, December 9, 2008, 7:57 AM

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[Guest guest]

Ruth,

It is so annoying. I am glad that you are closer to an answer. Yes, it

is very scary. There is treatment, just get to a good pediatric

rheum. It may take a few weeks, but it is so worth it.

Audra

>

> Jemma had an appointment this morning. Her dermatologist now suggests

>

[Guest guest]

I would suggest not freaking out yet...

Scleroderma is first off very rare.. especially the systemic form.. aka

systemic sclerosis but much much more common are linear, crest or other

localized scleroderma types and even all of these are rare... there's also

MCTD--- mixed Connected Tissue Disease which can involve Scleroderma as

well. Most types thaqt affect kids are localized to skin and even limited

areas of skin ....

There is a newsletter called Kids get Scleroderma Too and the website has a

similar name. They have a lot og good information there and is really one of

the few places that addressed Scleroderma in the ped. population.

Issadora

On Tue, Dec 9, 2008 at 3:02 PM, hopeinhonduras <wynhama@...>wrote:

> Ruth,

> It is so annoying. I am glad that you are closer to an answer. Yes, it

> is very scary. There is treatment, just get to a good pediatric

> rheum. It may take a few weeks, but it is so worth it.

> Audra

>

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> >

> > Jemma had an appointment this morning. Her dermatologist now suggests

> >

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--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

http://www.jsdn.org/whatisjsd.htm Is this the website?

>

> There is a newsletter called Kids get Scleroderma Too and the

website has a

> similar name. They have a lot og good information there and is

really one of

> the few places that addressed Scleroderma in the ped. population.

>

> Issadora

[Guest guest]

yep, thats the one... i actually wrote an article on there..... i have

others in files to work on but due to overwhelming stressors in my own life,

i havent been able to TOUCH my work with my mentor and them.... but anyways,

they have a lot of good information there.

I wrote an article there called Brain Power if interested... it's not on

Scleroderma itself though. It's more about using your mind to cope with the

effects of having it.

Issadora

On Wed, Dec 10, 2008 at 6:10 AM, Ruth <telemwill@...> wrote:

> http://www.jsdn.org/whatisjsd.htm Is this the website?

>

>

>

>

> >

> > There is a newsletter called Kids get Scleroderma Too and the

> website has a

> > similar name. They have a lot og good information there and is

> really one of

> > the few places that addressed Scleroderma in the ped. population.

> >

> > Issadora

>

>

>

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

Ruth:

There is another wondering support group called juvenile rheumatic

diseases.  Several of the kids on that group have Scleroderma and their moms are

a fountain of knowledge.  It is another wonderful group like this one.  I read

the posts there, but I don't do much posting there.  Just another thought for

you.

Beth & Hannah, 12, unspecified arthritis w/hypermobility; asthma; gerd;

migraines; vit d deficient

 

Sending prayers & happy thoughts,

Beth

________________________________

From: Issadora <FlyfreeIzzie@...>

Sent: Wednesday, December 10, 2008 8:31:37 AM

Subject: Re: Re: Scleroderma ?

yep, thats the one... i actually wrote an article on there..... i have

others in files to work on but due to overwhelming stressors in my own life,

i havent been able to TOUCH my work with my mentor and them.... but anyways,

they have a lot of good information there.

I wrote an article there called Brain Power if interested.. . it's not on

Scleroderma itself though. It's more about using your mind to cope with the

effects of having it.

Issadora

On Wed, Dec 10, 2008 at 6:10 AM, Ruth <telemwill (DOT) com> wrote:

> http://www.jsdn. org/whatisjsd. htm Is this the website?

>

>

>

>

> >

> > There is a newsletter called Kids get Scleroderma Too and the

> website has a

> > similar name. They have a lot og good information there and is

> really one of

> > the few places that addressed Scleroderma in the ped. population.

> >

> > Issadora

>

>

>

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

Thanks Issadora and Beth,

I will definitely check the article and will mark the group. I am

going to wait and see what happens diagnosis-wise.

Ruth

> >

> > >

> > > There is a newsletter called Kids get Scleroderma Too and the

> > website has a

> > > similar name. They have a lot og good information there and is

> > really one of

> > > the few places that addressed Scleroderma in the ped. population.

> > >

> > > Issadora

> >

> >

> >

>

> --

> " How exactly does one become a butterfly? You must want to fly so

badly that

> you are willing to give up being a caterpillar. "

> - Trina us

>

>

[Guest guest]

Hi Ruth and I too send a late welcome. My name is Donna and I am glad you are

researching for your daughter and I hope you have some answers soon. I just

wanted to say dont freak out yet. Scleroderma is a scary word but in its worst

form is quite rare. I was diagnosed in 1970 with scleroderma (linear) and later

with Poly JRA. I am now 43 and just last winter was dealing with a recurring

bout of morphea, the new name for localized scleroderma. I had the hand , finger

issues since I was ?very young but overall I have done well. I will be thinking

of you and Jemma and if you have any questions, do not hesitate ok.....

[Guest guest]

Donna, I didnt realize that you have Morphea but now it makes sense

actually!

We had a girl with it at camp and another with umm.... something... de

sebre.... can't remeber the first name of it.... we had one girl with

systemic scleroderma as well and we have had another with crest... and a few

with MCTD over the years. I think Ive seen the whole range.

One of my primary mentors is a psychologist and one of her research areas of

interest is Scleroderma. Because of her, that is how I got connected with

the JSDN. I know about the JRD group but they don't people like us with it,

only parents of kids/teens with it. Whatever the case, I have been

involved in some of my mentors research efforts and I just enjoy reading

what her grad students come up with in terms of health psych research in the

area. Recently, someone did their dissertation on the use of humor coping

and quality of life with people that have Scleroderma.

Anyways, I have this friend with Polymyositis who is aroound 40ish and

suddenly she started developing issues swallowing, eating and things. NO one

could figure out what was wrong with her but a trip to the Mayo found that

she has internal scleroderma issues. I just can't understand how she got it

intenrally yet doesnt have the disease outside and has primary polymyositis

and RA! I think there are many areas these doctors arent reseasrching

however because there are so few people with issues like this, they just

dont bother... which is sad.

My friend is doing pretty well now that she knows whats going on and not

much they can do about it but manage the sympoms and stuff. I do think she

recently said shes having issues with her fingers... so guess its moving to

the outside now. Sounds like systemic scler. but dint have the typical

presentation. Im worried about her actually but really dont know what can be

done or said really...

Dont know what im praddling on about! lol...

ciao

Issadora

On Wed, Dec 10, 2008 at 9:47 AM, <ajaoky@...> wrote:

> Hi Ruth and I too send a late welcome. My name is Donna and I am glad

> you are researching for your daughter and I hope you have some answers soon.

> I just wanted to say dont freak out yet. Scleroderma is a scary word but in

> its worst form is quite rare. I was diagnosed in 1970 with scleroderma

> (linear) and later with Poly JRA. I am now 43 and just last winter was

> dealing with a recurring bout of morphea, the new name for localized

> scleroderma. I had the hand , finger issues since I was ?very young but

> overall I have done well. I will be thinking of you and Jemma and if you

> have any questions, do not hesitate ok.....

>

>

[Guest guest]

yep I originally had some discloloration. Skin appeared as if I had been in a

fire and it was in a linear pattern and after much ado and a biopsy I was dx'd

localized scleroderma, then a gamut of other things soon followed. From what I

understand it does not have to have an outward manifestation yet it is a

condition related to skin....who knows? Like you I feel so much more research

should be done. I dont think docs even know half the time.

Donna