Re: [JRA]EDS - Beth & Issadora

[Guest guest]

Hi Beth,

I think generally you are correct - some people are just hypermobile - but,

there are some disease conditions that actually cause hypermobility.  is

hypermobile in her hips and in her hands, in the pip joints while she has the

flexion in the dip joint (hence, the " swan neck deformity " ).  Chronic

inflammation of the PIP joint (jra/RA being most common cause) puts stretch on

the supportive ligament the PIP joint that keeps it from hyperextending.)

The ligament gets weak and stretched, the PIP joint

becomes loose and begins to easily bend back into hyperextension. The ring

splints prevent the hyperflexion.

No one ever recommended these for Hannah?

Issadora - are you thinking of silver ring splints?  They are quire attractive

and you can even get them with stones or diamonds.  just has silver but

gets kids asking about them as they think they are just cool jewelry...Only

certain OT's can order them, but if you look online, you can call the company

and find an OT near you to do the fitting (they do require a prescription).  We

use the Silver Ring Splint Co.  I see something about " your heart " ?? - I hope

everything is okay!

>

> > Thanks for checking in, Helen. You and Nick have been in our thoughts.

> > So sorry to hear about your co-worker. These are trying times for so

> many.

> > Please stay strong.

> >

> > Much Aloha,

> > Georgina

> >

> > RE: Check In , Helen, Alia, Rusty, Tree,

> >

> > Hi all and a merry Christmas to all,

> >

> > I am sorry I have been absent for awhile. life can sometimes be a

stuggle

> > and in these days and times it hits everyone.

> >

> > We lost my father in law to Cancer in Sept, was Dx with Elhers

> > danlos Symdrome was well as his Systemic JRA

> >

> > I had surgery, a shoulder decompression as I have a partial tear in my

> > rotator cuff in October and was laid up for awhile. I have been going to

> PT

> > since the summer, my fibromyalgia is doing well, but my shoulder will

> need

> > more intensive surgery in the new year.

> >

> > Dan got laid off in Nov, so the medical nightmare with Nicks remicade

> > continues. We are on cobra right now and will switch to my company's

high

> > deductable plan in Jan, so I need to find $6000 deductable, sigh.

> >

> > last week a close work buddy, left the office one morning and said he

> would

> > be right back, went home and committed suicide. he has been with the

> company

> > 30+ years so it was a complete shock to all. We had a grief counciller

in

> at

> > work last friday and yesterday was his service. TOO TOO sad.

> >

> > On to the good news, nick is doing well and come the new year we are

> going

> > to try and go 6 weeks between remicade infussions, cross your fingers

> will

> > ya.

> >

> > And my son nows in the navy is home on leave for the holidays, so its

> nice

> > to be surrounded by loved ones.

> >

> > Well thats about us in a nutshell, my shoulder is worthless so typing is

> > never easy, so i try to aviod it where possible.

> >

> > hugs and kisses to all our friends out there, sorry i have been such a

> > slacker lately. Ill try and do better in the new year ))

> >

> > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome,

> > classical type)

> >

> > ____________ _________ _________ _________ _________ _________ _

> > Life on your PC is safer, easier, and more enjoyable with Windows

> Vista®.

> > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/

> >

> >