Update on Chase

[joy]

Hello everyone! Its been a long time. Thought I would give you an
update on my son, Chase. He is taking a break from college right
now---he hopes to return in the spring. He is driving all over the
place...really spreading his wings. He moved out...staying with
grandparents. I miss him. But hey, they have to grow up right? He
does not ever complain about SJS and he seems to be doing GREAT. Hope
this finds you all well!

[Tammy Urioste]

Hi Joy, it's nice to hear from you.  I am glad to hear to Chase is doing well.  What was he going to college for?  How nice it will be when Nathan starts driving, he can run errands for me.  Nathan also, has never complained about SJS.  No aches or discomfort. I don't know if because that is all he knows.    The weather is getting cold and I can see it in him, but of course, he has not complained.  He has sure taught me a lot.  He is in the 5th grade now and likes school a lot.  Well take care:)    
 
 

---

Tammy Urioste

 

 
> Date: Wed, 27 Oct 2010 20:31:39 -0700
> Subject: [SJS] Update on Chase
> From: darntha...@hotmail.com
> To: schwartz-jam...@googlegroups.com

> --
> You received this message because you are subscribed to the Google
> Groups "Schwartz-Jampel Syndrome" group.
>
> Visit the SJS Groups Webpage at
> http://groups.google.com/group/schwartz-jampel-syndrome?hl=en
>
> To post to this group, send email to
> schwartz-jam...@googlegroups.com
>
> To unsubscribe from this group, send email to
> schwartz-jampel-sy...@googlegroups.com

[Payne Aaron]

Hi Joy and Tammy,

It's good to hear that your boys are doing well. Could you pass along
a current picture?

thanks,
aaron

On Oct 28, 2010, at 12:12 AM, Tammy Urioste wrote:

> Hi Joy, it's nice to hear from you. I am glad to hear to Chase is
> doing well. What was he going to college for? How nice it will be
> when Nathan starts driving, he can run errands for me. Nathan also,
> has never complained about SJS. No aches or discomfort. I don't
> know if because that is all he knows. The weather is getting cold
> and I can see it in him, but of course, he has not complained. He
> has sure taught me a lot. He is in the 5th grade now and likes
> school a lot. Well take care:)
>
>
>

> Tammy Urioste

[Mdnew...@aol.com]

Hello to everyone!

My name is Mitchell Newmark.  I'm a psychiatrist, 48 yeas old, living in Manhattan, married, with an 18 year old who just started college, and a 15 year old who just started high school.  And only three years ago, I was diagnosed with SJS.  A friend of mine found this support group on line, and I've been in contact with Aaron.

I had no clear evidence of any illness until I was 11 or 12.  I then developed a bunch of orthopedic problems, and over the years I've had 2 hip replacements and 2 knee replacements.  I've never had pain (other thn arthritis before the joints were replaced) or stiffness (unless it's cold).  I had a very slow progression of weakness, although I was always able to get around without any asistance.  About three years ago, my weakness accelerated, and I went to a neurologist who diagnoed SJS.  It put a lot of random symptoms together for me.  The accelerated weakness, however, was due to a ruptured mitral valve.  If that didn't happen, I might still not know that I had SJS.  Unfortunately, I became so debilitated, even after a surgical repair, that I am now very weak and use crutches or a scooter to get around.

It was a great relief to find other people with this illness.  I'm open to discussing anything!

Mitchell Newmark

[debraca...@verizon.net]

Hi Michell,

Welcome to the group...what a moving story, thanks for sharing with us.  My son Jack was clinically diagnosed at 4 and he is 5 years old now. ...thankfully he has been receiving services since he was 2 beginning with a misdiagnosis of  cerebral palsey...Im curious if youve had the DNA test??? If so where??? You are the closest member of the group weve found so far ... We live in Freehold, NJ...I am going to send some updated pics of jack...we'd love to see pics of your family too...My husband is a chiropractor/acupunturist and Jack has found great relief in both.  Looking forward to talking to you...

 

Debbie Campbell    

--

[Mdnew...@aol.com]

Debbie,

It was very nice to hear from you.

It has taken me a while to pursue the SJS, because I had to take care of my heart first.  I just got the blood work done for the first round of genetic testing for myotonic dystrophy, which needs to be done before the SJS test.  The SJS doctor I've seen is Robert Griggs, in Rochester New York.  He is supposed to be the leading researcher in the field, although he has little to offer in terms of treatment.  It seems to me that muscle stiffness is a major component of most people's symptoms, which is not true for me.  Muscle weakness is my biggest problem.  I can let you know more about the testing as it proceeds.

Is anyone else in your family affected?

Mitchell