New kid on the block!

[Guest guest]

Welcome to the group, Denis. We're glad you found us. Autoimmune diseases

plague all of us.

Ray Neal, moderator

Reiters Syndrome, aka Reactive Arthritis; Fibromyalgia; Sjogrens Syndrome;

Asthma; Chronic Fatigue; Chostochronditis; Migraines; Multiple Allergies;

Chemical Sensitivities

[Guest guest]

Well, welcome to Arizona, Denis...I'm in Apache Junction now, but started out in

Tucson. I'm just a year older (well, okay, will be 53 next month), and have

been disabled since 1993 officially (haven't worked full time over six months

since 1989 due to CFS symptoms. I too, have a multitude of diagnoses, including

Lupus, CFS, Fibromyalgia, Reiter's, Somatoform Disorder, Hypothyroid, Gout,

Asthma (triggered by scents, temperatures and exercise), Depression, Diabetes,

Osteoarthritis (new one;o) and some I'm sure I've got paperwork for in the

filing cabinet. I went for years trying to get some relief, and this list was

my first oasis. I'm sure you'll find lots of answers and hopefully some coping

skills that'll enrich your lifestyle. I'm not very active here now since being

diagnosed with FMF and having colchicine turn around all my symptoms except for

feet pain and stiffness....therefore, may be dealing with both FMF and RS/RA.

Guess only time will tell for the rest of the story.

It sounds like not working is very hard for you, and I do understand. I had

been able until this past year to at least dabble with part-time work, however,

I had to completely give up that. With your knowledge, let's hope you can find

some ways to feel challenged, even though working isn't an option;o) And,

Priscilla is dear to me as well, and fwiw the only person I've met " live " from

the list...she won't steer ya wrong;o)

Glad you found the list, as I know how important it is to have others to talk to

that fully understand what you're expressing.

Susie

*********** REPLY SEPARATOR ***********

On 9/9/2004 at 2:48 PM denisgd@... wrote:

Hello,

My name is Denis G. Downton, 52 yrs old, and I live in Catalina, AZ.. I was

diagnosed with Polyarteritis Nodosa (Autoimmune disease, which attacks the

[Guest guest]

Dear members,As a newcomer to the group, I would like to share with you some of my experiments and observations. To begin with, I am the father to a 7-year old boy with mild-AS diagnosis. I am from Ankara, Turkey. Though I did not have the time to go through all the mails posted in the group, some of the mails I read really surprised me. I was surprised to see how different conditions we had. Please do allow me to explain as briefly as I can:(1) Here in Turkey, we have access to almost any kind of health service almost immediately. You can make an appointment with a child psychiatrist even on the day you asked for or maybe in the coming few days. There are well-trained psychiatrists especially in big cities having considerable experience in AS. And more importantly these services are free. (2) Although basic health services are not so bad, school

system is literally awful. Teachers in public schools have neither experience nor the energy to deal with a "problem kid". The only alternative is private schools, where you can find more sympathy, understanding and even some experts to help you. My son is a 2nd year student in a privately run elementary school and doing fine with the help of his teachers. But such schools are very expensive in our standards. (3) In case you need special education you have once again 2 alternatives- public and private. There are very few public schools offering education especially for kids with low functioning autism. AS is too mild a syndrome to be accepted to such schools. There are also some private schools, but they too are too busy with what they call more severe cases.(4) There is a severe problem of having access to written material. There is almost nothing written in Turkish- very very few materials, only with some basic facts. If you don't have access

to English material you are left alone. There is only one support group on the net, which is doing fine.(5) There is also the problem of what I could call "social recognition". Parents of such children prefer not to "go public", one of the reasons why there are so few support groups on the net. It is difficult to get support even from your nearest relatives. Even for my mom, for instance, my son is a perfect boy with some minor and manageable problems in making friends. Please do allow me to take this opportunity to extend from this corner of the world my warmest feelings of sympathy to the brave members of this group.Oguz

[Guest guest]

Welcome to our group! Sorry I am late in replying but we love having people from other countries to tell us what's happening in your neighborhood!

RoxannaYou're UniqueJust like everyone else...

( ) New kid on the block!

Dear members,As a newcomer to the group, I would like to share with you some of my experiments and observations. To begin with, I am the father to a 7-year old boy with mild-AS diagnosis. I am from Ankara, Turkey. Though I did not have the time to go through all the mails posted in the group, some of the mails I read really surprised me. I was surprised to see how different conditions we had. Please do allow me to explain as briefly as I can:(1) Here in Turkey, we have access to almost any kind of health service almost immediately. You can make an appointment with a child psychiatrist even on the day you asked for or maybe in the coming few days. There are well-trained psychiatrists especially in big cities having considerable experience in AS. And more importantly these services are free. (2) Although basic health services are not so bad, school system is literally awful. Teachers in public schools have neither experience nor the energy to deal with a "problem kid". The only alternative is private schools, where you can find more sympathy, understanding and even some experts to help you. My son is a 2nd year student in a privately run elementary school and doing fine with the help of his teachers. But such schools are very expensive in our standards. (3) In case you need special education you have once again 2 alternatives- public and private. There are very few public schools offering education especially for kids with low functioning autism. AS is too mild a syndrome to be accepted to such schools. There are also some private schools, but they too are too busy with what they call more severe cases.(4) There is a severe problem of having access to written material. There is almost nothing written in Turkish- very very few materials, only with some basic facts. If you don't have access to English material you are left alone. There is only one support group on the net, which is doing fine.(5) There is also the problem of what I could call "social recognition". Parents of such children prefer not to "go public", one of the reasons why there are so few support groups on the net. It is difficult to get support even from your nearest relatives. Even for my mom, for instance, my son is a perfect boy with some minor and manageable problems in making friends. Please do allow me to take this opportunity to extend from this corner of the world my warmest feelings of sympathy to the brave members of this group.Oguz

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