Re: Hailey Grummons My questions for the future...

[Guest guest]

The first thing you need to know is that Still’s is really, really, rare. How

rare? The estimates vary wildly but say that only 1 in about 100,000 - 200,000

people have it. So if you live in a town of 400,000 people there may be only two

of you in town. Most Doctors have never even heard of it, let alone friends,

neighbors and interviewers. I don’t tell people I have Still’s at first

because they have no clue. I say I have a rare form of Rheumatoid Arthritis -

it is an Autoimmune Disease. That usually shuts them up. If not, I try to

explain Still’s – usually that is a lost cause. Another thing is that the

symptoms can be almost anything and are different for almost everyone. The third

is that the different medications work differently for almost everyone.

Eventually most of us find a good rheumatologist and get into remission for some

length of time. I think most of us started out with Prednisone and maybe with

Methotrexate. If Kineret is not working for you, ask about these. There are

several additional drugs which work for some people. Because the symptoms and

the effective remedies are different for each person, your doctor won’t

necessarily know what is best for you, and won’t know what is not working

unless you tell them.

It is really hard when you feel crappy and people say “You don’t look

sickâ€. Or just say “get tough and get over itâ€. But you do have to go

on and hope for the best. Most of us have a future as pain-free productive

adults and may only experience a few flares over the years. For a few of us,

unfortunately, it is worse. Still’s is a scary disease and you have a right to

be scared, but most of us have a good life, which includes spouses and children.

This support group is a good source of information. You should remember, though,

that it is mainly the sickest people who post the most, naturally. You don’t

hear much from the ones who are leading normal lives.

Good luck. We understand.

Mike in Corpus Christi, Tx.

From: hAILEY gRUMMONS

Sent: Friday, July 27, 2012 1:08 PM

To: Stillsdisease

Subject: My questions for the future...

A lot of you are far older then me and understand Stills a whole lot better then

me.

But I have some questions.

I am only 17, but what about when I'm ready to have kids, how will that work

out? I mean, it seems hard enough to carry my own 120 pounds of weight around

with all the pain, how will carrying a little one be like?

And does the rash ever really go away? It seems like it mostly goes away and

then comes right back again.

Have any of you guys tried Naproxen? My doctor prescribed it to me yesterday to

help with this relapse.

Have any of you had problems getting jobs? Because I've gone to interviews and

when they ask if I have any illnesses I tell them the truth, 'I have stills

disease' and when they ask me to explain and I do they look at me like I'm crazy

and they never call me. One time I told the interviewer,

'Yes, I suffer from stills disease'

He answered with,

'What? What is that? That sounds like some kind of std.'

I just walked out before I had to punch him...