Some Answers about JRA-Related Iritis/Uveitis

[Guest guest]

[i noticed my post never made it earlier in the month. Submitting

again.]

Here is a flow chart that shows how often each JRA-subtype (pauci,

poly, systemic) child should be examined:

http://www.uveitis.org/medical/treatment/algo3.html

's link to the same website is very helpful -- it is the best

uveitis resource in the world (articles, research, kids' page,

parents' and other onlne support, " Ask Dr. " , etc.). Alia's

mention of the *SILENT* nature of JIA/JRA-related iritis is so true

for most of our kids. If your child has JRA, and you are able to

visually notice an eye problem, a lot of damage has already

occurred. All our children are at risk of developing this horrible

complication of their disease.

I am not an expert on the disease, but I am the expert on my 4-year-

old daugter's chronic JRA-related uveitis. We have been living with

this daily, more so than we ever did with the JRA, since August 1,

2005, when a regular screening exam exposed the disease. le

and I also went to the pediatric uveitis conference at the

Massachusetts Eye Research and Surgery Institute (MERSI -

pronounced " mercy " ) to see Dr. in April and I was fortunate

enough to meet ' and a, Alia and Caroline, and many others.

I also found out about " intraocular

pressure, " " cells, " " glaucoma, " " cataracts, " " shunts, " and " port-a-

caths " -- and this was just from the wonderful 11-year-old girls

(a, Kelsea, and Demi) acting as big sisters to little le!

At a real high level, uveitis is an inflammation of the eye. The

same autoimmune disease that attacks our children's joints, sometimes

attacks their eyes. It can be seen using a " slit lamp " biomicroscope

used in the hands of a trained ophthalmologist. For " simple " JIA-

related iritis (inflammation of the iris) they can see (white

blood) " cells " floating in the anterior chamber fluid. One person

described it looking like " dust particles floating in a movie

projector light. "

1 - Uveitis is the third leading cause of blindness in the U.S., and

it's preventable!

2 - Uveitis in children blinds a larger percentage of those affected

than in adults.

3 - There are 85 known causes for uveitis in children and adults.

However, 80% of the iritis (a subset of uveitis) in children is

related to the one cause called *JRA*. 90% of these JRA-related,

iritis-affected, children have pauciarticular JRA. 90% of those

pauciarticular children are ANA+.

The disease is treatable, even in stubborn cases like ANA+,

pauciarticular JRA, females (i.e. le). Improperly treated,

like the path we were originally on, absolutely leads to cataracts,

glaucoma, and possibly blindness. Proper treatment is still a

horrible roller coaster, but as we all know, education (and prayer)

takes some of the mean curves out of the ride.

Fighting this complication of JRA has become a passion for me and my

wife. Daphne and le made the first trip to MERSI in February

after becoming exasperated with the " standard, " improper, iritis

treatment. If we can be of any assistance, please let us know.

----------------------------------------------------------------------

----------

From: veristroud@...

Reply-

Subject: Question about Uveitis

Date: Mon, 5 Jun 2006 08:37:57 EDT

[Guest guest]

Hi Steve,

I do not type as eloquently as you. I am so glad you posted! Now I can tell

a that Gabby's Dad mentioned her in the post. She'll get a kick out of

that. I hope this finds Gabby doing well.

I get too preachy sometimes when I talk about doctors who improperly treat

uveitis patients, but I see my daughter and what she has and is going through

and it can tear me up. I don't want anyone else going through it. Uveitis can

be silent, and in her case it absolutely was. No redness, no pain, and because

she was so young she didn't have a good visual base to even compare or pull

from. She had no idea she was blind in one eye until she said, Mom you look all

pink..so does that wall.... She was unable to see because of a vitreous

hemmorhage.

Improperly treated uveitis with steroids only, then to a too low of a dose of

immunomodulator drugs. What a waste of time injecting her with MTX and

cyclosporin for a year when it didn't get her quiet. I guess you could say I am

still bitter because the doctor did not refer her to an occular immunologist.

Two vitrectomies, one cataract extraction, one iol implant, many steroid

injections, cyroplexy, 5 changes of meds later and we are still fighting like

hell to keep on top of the inflammation. 5 days of infusions of ivig every

month (at 5 hours a shot) trying to prepare her for another vitrectomy, another

cataract extraction and another iol implant.

Uveitis is treatable, and it helps to get it under control as soon as

possible. Please don't let an ophthalmologist with an interest in uveitis set

you down a road that we went on. I have a lot to be thankful for, and finding

that website Steve is one of them.

Sorry for my rant! Please keep posting Steve you communicate so much better

than I do!

' & a 10 yrs. jia/uveitis

gabrielles_parents <stevegabrys@...> wrote:

[i noticed my post never made it earlier in the month. Submitting

again.]

Here is a flow chart that shows how often each JRA-subtype (pauci,

poly, systemic) child should be examined:

http://www.uveitis.org/medical/treatment/algo3.html

's link to the same website is very helpful -- it is the best

uveitis resource in the world (articles, research, kids' page,

parents' and other onlne support, " Ask Dr. " , etc.). Alia's

mention of the *SILENT* nature of JIA/JRA-related iritis is so true

for most of our kids. If your child has JRA, and you are able to

visually notice an eye problem, a lot of damage has already

occurred. All our children are at risk of developing this horrible

complication of their disease.

I am not an expert on the disease, but I am the expert on my 4-year-

old daugter's chronic JRA-related uveitis. We have been living with

this daily, more so than we ever did with the JRA, since August 1,

2005, when a regular screening exam exposed the disease. le

and I also went to the pediatric uveitis conference at the

Massachusetts Eye Research and Surgery Institute (MERSI -

pronounced " mercy " ) to see Dr. in April and I was fortunate

enough to meet ' and a, Alia and Caroline, and many others.

I also found out about " intraocular

pressure, " " cells, " " glaucoma, " " cataracts, " " shunts, " and " port-a-

caths " -- and this was just from the wonderful 11-year-old girls

(a, Kelsea, and Demi) acting as big sisters to little le!

At a real high level, uveitis is an inflammation of the eye. The

same autoimmune disease that attacks our children's joints, sometimes

attacks their eyes. It can be seen using a " slit lamp " biomicroscope

used in the hands of a trained ophthalmologist. For " simple " JIA-

related iritis (inflammation of the iris) they can see (white

blood) " cells " floating in the anterior chamber fluid. One person

described it looking like " dust particles floating in a movie

projector light. "

1 - Uveitis is the third leading cause of blindness in the U.S., and

it's preventable!

2 - Uveitis in children blinds a larger percentage of those affected

than in adults.

3 - There are 85 known causes for uveitis in children and adults.

However, 80% of the iritis (a subset of uveitis) in children is

related to the one cause called *JRA*. 90% of these JRA-related,

iritis-affected, children have pauciarticular JRA. 90% of those

pauciarticular children are ANA+.

The disease is treatable, even in stubborn cases like ANA+,

pauciarticular JRA, females (i.e. le). Improperly treated,

like the path we were originally on, absolutely leads to cataracts,

glaucoma, and possibly blindness. Proper treatment is still a

horrible roller coaster, but as we all know, education (and prayer)

takes some of the mean curves out of the ride.

Fighting this complication of JRA has become a passion for me and my

wife. Daphne and le made the first trip to MERSI in February

after becoming exasperated with the " standard, " improper, iritis

treatment. If we can be of any assistance, please let us know.

----------------------------------------------------------

----------

From: veristroud@...

Reply-

Subject: Question about Uveitis

Date: Mon, 5 Jun 2006 08:37:57 EDT

---------------------------------

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[Guest guest]

Steve & ,

Thanks for the web site information and for the information you sent on your

daughters. It is amazing how much some of these kids have had to go through

in their young lives.

Veri & Jaye 12 poly

[Guest guest]

This is a rather old post, but it does contain a link to an informative

website and it does talk about Dr. . Michele

________________________________

From: [mailto: ] On

Behalf Of gabrielles_parents

Sent: Sunday, June 25, 2006 7:34 PM

Subject: Some Answers about JRA-Related Iritis/Uveitis

[i noticed my post never made it earlier in the month. Submitting

again.]

Here is a flow chart that shows how often each JRA-subtype (pauci,

poly, systemic) child should be examined:

http://www.uveitis.org/medical/treatment/algo3.html

<http://www.uveitis.org/medical/treatment/algo3.html>

's link to the same website is very helpful -- it is the best

uveitis resource in the world (articles, research, kids' page,

parents' and other onlne support, " Ask Dr. " , etc.). Alia's

mention of the *SILENT* nature of JIA/JRA-related iritis is so true

for most of our kids. If your child has JRA, and you are able to

visually notice an eye problem, a lot of damage has already

occurred. All our children are at risk of developing this horrible

complication of their disease.

I am not an expert on the disease, but I am the expert on my 4-year-

old daugter's chronic JRA-related uveitis. We have been living with

this daily, more so than we ever did with the JRA, since August 1,

2005, when a regular screening exam exposed the disease. le

and I also went to the pediatric uveitis conference at the

Massachusetts Eye Research and Surgery Institute (MERSI -

pronounced " mercy " ) to see Dr. in April and I was fortunate

enough to meet ' and a, Alia and Caroline, and many others.

I also found out about " intraocular

pressure, " " cells, " " glaucoma, " " cataracts, " " shunts, " and " port-a-

caths " -- and this was just from the wonderful 11-year-old girls

(a, Kelsea, and Demi) acting as big sisters to little le!

At a real high level, uveitis is an inflammation of the eye. The

same autoimmune disease that attacks our children's joints, sometimes

attacks their eyes. It can be seen using a " slit lamp " biomicroscope

used in the hands of a trained ophthalmologist. For " simple " JIA-

related iritis (inflammation of the iris) they can see (white

blood) " cells " floating in the anterior chamber fluid. One person

described it looking like " dust particles floating in a movie

projector light. "

1 - Uveitis is the third leading cause of blindness in the U.S., and

it's preventable!

2 - Uveitis in children blinds a larger percentage of those affected

than in adults.

3 - There are 85 known causes for uveitis in children and adults.

However, 80% of the iritis (a subset of uveitis) in children is

related to the one cause called *JRA*. 90% of these JRA-related,

iritis-affected, children have pauciarticular JRA. 90% of those

pauciarticular children are ANA+.

The disease is treatable, even in stubborn cases like ANA+,

pauciarticular JRA, females (i.e. le). Improperly treated,

like the path we were originally on, absolutely leads to cataracts,

glaucoma, and possibly blindness. Proper treatment is still a

horrible roller coaster, but as we all know, education (and prayer)

takes some of the mean curves out of the ride.

Fighting this complication of JRA has become a passion for me and my

wife. Daphne and le made the first trip to MERSI in February

after becoming exasperated with the " standard, " improper, iritis

treatment. If we can be of any assistance, please let us know.

----------------------------------------------------------

----------

From: veristroud@... <mailto:veristroud%40aol.com>

Reply- <mailto: %40>

<mailto: %40>

Subject: Question about Uveitis

Date: Mon, 5 Jun 2006 08:37:57 EDT