Testimonials

Who better to tell our story than our members themselves?

Below are some testimonials written by our organization members telling how
they feel about our organization and about our Yahoo info/chat group.

First, our official Chaplain, Fr. Mike,has written a special welcome and
introduction and is the first letter below:

WELCOME TO OUR FAMILY!

Hi to all the new folks out there - we're sorry you had to find us this

way but you have now joined a new family that is here to share your

story with, provide support, supply oodles and oodles of information,

and just plain be here for you when you're having a bad pain day. My

first advice is to make sure and respond to the invitation to join us

at our Yahoo site.

So that you may have access to all the vast resources of our

organization including such info as doctors, facilities, medications,

pain control, pre- and post- op surgery info and expectations, the

latest treatment options, and our members experiences with those

options. When you're new, there is so much you're learning that, if

you are like me, you don't even think of checking the thousands of back

posts at the Yahoo site. I regularly repeat (and update) part of my

post from a conference I attended at Penn Orthopedics in Philadelphia

where I had my own Total Hip Replacement (THR) performed. The

following comments in the welcome by Dr. Craig Israelite were an eye

opener:

"The best patient is the educated patient. You have on the average 15

minutes to present your case to the orthopedic doctor on your initial

visit. Be sure to write your questions down and do your research. Of

special importance are these key descriptive words:

1) Pain (location, type, and duration and is it during movement or at

rest)

2) Swelling

3) Locking

4) Catching

5) Loss of motion

6) Stiffness

7) What makes it better or worse

8) When did it start and how long has it been going on

9) Was an injury involved

Be sure to ask questions. If the surgeon doesn't answer your questions,

then move on to a different surgeon." (Docs words, not mine).

As Marie our President is fond of saying, we must be our own best

patient advocate. And the info you need to do that is on the Yahoo

site. So, after your invitation to our private Yahoo site is

processed, get comfortable and start surfing our files and links. You

will also receive info on how to join us at our regularly scheduled

chat sessions (Wednesday at 9 PM and Thursday at 10 PM Eastern Time)

where you can just lurk and listen or ask away. And since humor is so

important in pain management, you can usually get a few chuckles out of

the chatters as well. And trying to keep up with several conversations

at one time is a challenge that gets addictive. For those who feel

they might not belong, check out the members stories in the Yahoo files

including my own journey entitled "What's so special about this disease

anyway?" which you can find in "Chappies Best". Also, go to the

"Caring/Sharing" section of the Yahoo files to find other great morale

boosters - I especially like the story of "throwing a pity party", and,

"Marie's AVN Garden". You will also receive my email address so that

you can reach me privately if you so desire with any special requests.

If you are having surgery, you can notify Linda Latham, our "Lady in

Red", who will make sure you are listed in our Yahoo Upcoming Surgery

Dates file so members can send you their well-wishes and offer a

special prayer for you if you so desire. If you're not having surgery,

you will be able to send some well-wishes of your own. I know they

will be appreciated.

For the care-givers in our AVN/ON family, we know that sometimes it's

tough putting up with us and our pain and complaining and we get cranky

and difficult on bad pain days (and even sometimes on those rare good

days), but we appreciate your patience and support even though we may

have difficulty finding the right words at times. Thanks for being

there for us.

And, as I referred to earlier, don't forget to check out the section in

the Yahoo files on docs and facilities in your area. You know,

sometimes a doc may seem a bit intimidating - after all, they have bad

days too - but just imagine him or her in one of those hospital gowns

with his/her bare butt sticking out! And then smile! And make extra

copies of the info you find in the Yahoo files to give to him/her as

well - you may be his/her only link to updated info.

So hang in there. We can't tell you what to do but we can share our

experiences with you, good and bad, and how we deal with them. And we

will listen to you and try to answer your questions as best we can.

And you may have some information to share with us that will eventually

help another member of our AVN/ON family. ‘Cause you're family now,

and we are with you in our hearts and in our prayers. God bless.

Blessings and a hug,

Fr. Michael, AVN/ON Chaplain (aka avnchap, aka Chappie)

PS - Be sure to check out the

ive program. Every donation helps each

and every one of us by keeping this site available for all of us in

need of this wonderful support and to support our efforts for the

research project at the Hospital for Special Surgery in New York City.

Here's our "Chappy", calling one and all to
dinner at our picnic!

______________________________________________________________________

I was diagnosed with AVN in January 1995. I was 18 and didn’t

understand what this would mean or truly what AVN even was. I searched

and

searched for answers but back then there was very little

information out there, let

alone someplace that could answer my many

questions

;

at 19 my surgeries began.

Over the next several years I

had problems on and off. No one new how to treat

AVN, especially AVN

of both talus bones. I became a nurse which allowed me a

way to

learn more, but still I felt Isolated. 10 years later I found this

site

I had

still never met a person with AVN, and after several more

surgeries, with more to

come

I never felt so scared or alone.

That

ended the day I joined this group!

ere I found people that

understood with

both compassion and empathy. I no longer felt like a

freak with a disease no one

understood. Here I found people struggling

with the same issues, finding a right

doctor,

hearing about which procedures

worked for some, a group that understood

the pain and the daily toll

of living with this painful a

debilitating illness.

Now I am 30,

with still more surgeries to come, but in here, in this group, I have

found a family that supports, understands and accepts me. Here I can

vent my

frustration to those who understand, and also a place where

sometimes I have

answers others are seeking. It's a give and take

cycle, as it is in most families.

But the greatest gift is the love,

support and comfort of belonging. When I count

my blessing

this

group is high on the list. Anyone looking for answers, support,

understanding are each welcomed with open arms to this group, this

family.

Jamie J

The greatest fear one can have is the fear of the unknown. When confronted

with AVN, specifically the apparent lack of significant knowledge about the

condition, it is easy to be overcome by a sense of hopelessness and utter

devastation.

That is exactly how I felt when I was diagnosed back in 99. I believe that the

only way

overcome those emotions and conquer your fear is to arm yourself;

arm yourself with knowledge and fortify your defenses with those who truly

understand what you are going through.

To this end, our support group can go a really long way in

assisting you. From

the wealth of information in our Yahoo info/chat site,

to the compassionate ears

of the many regular contributors and active members, and our very own

Chaplain, Father Mike! If you have been afflicted with AVN and are searching

for answers, then search no more.

Take care

Azy P.

This is our official ribbon, which was designed and created by our
group member, Jebono. With great thanks to her for her time and
creativity, we proudly display this ribbon as a symbol of our dedication
to one another, and in our fight to conquer AVN. Someday, we will have
the funds to make these ribbons for the membership, but for now, each
person makes his own. Directions for making our ribbon can be found
at our Yahoo info/chat site.

The following is from a post on our message board, and was written by member
Mary Renee. She shares some inner thoughts and feelings with us....

Mornin', Group,

Today is a Good day.

While drinking my second cuppa coffee, on this second day of '07, I am

thinking of all the wonderful things this AVN Support has given me. A

member since stumbling upon this site in Sept.'06. I was diagnosed

with ON of my right knee, "Spontaneous" is what the MRI said because

I am one of the Strange ones..."no apparent cause".

I have been in this wheelchair for 5 months now. I know this is not a

long time to most of you. But it has been a very long time to me and

my Family and friends. I have never felt so Loved, Spoiled, Hovered over,

sometimes Smothered as well as Shut out, Pitied, or SO Invisible!

Throughout this Holiday season, I realized a whole different and at

times, Wonderful Level in my life. Wheelchair Level. Babies in

strollers smile at me. Children of all ages notice me and smile, some

follow me in awe (or envy) to see what tricks I can do! Other

wheelchair veterans nod at me. Many kind strangers smile as they

hurriedly open doors for me. Sales people are extra helpful and

cheerful. And absolutely Every person I said, "Merry Christmas" to,

smiled, and said a whole hearted "Merry Christmas" back to me!

And the Best part of all!! At Wal-Mart, I found a W-D 40 PEN in the

check out line! At MY eye level! I NEVER would have seen it if I had

been STANDING in line! (-; There's really cool stuff at Wheelchair

level. Especially the acceptance and fascination of Children! That's

almost made it worthwhile!(-;

Being a part of this phenomenal group has helped me to see the Good

and the Bad and the Ugly of AVN-ON. The Good is all the Support and

Understanding and hugs that pour sincerely from each member. You

don't leave us hangin'. The Bad part is easier to take with all of the

Info and teaching you offer about this dreadful, little known

disease. The Ugly is dealt with head on, not Sugar coated, but put

out to us honestly and again with heartfelt sincerity and your hand

to hold on to.

This Group has taught me to see the Good in the Bad and the

Ugly...One day at a time!( ya think I've been watching too much TV?!)

Happy New Year!

Mary Renee

Ahh! Memories! This is a group of us at our first Annual Family Day Picnic, held at
Fr. Mike's place in the Pocono mountains, PA. We were sitting around the
campfire, about to enjoy the fireworks show. One family came from as far away as
Georgia! This year, we hope to see member Cheryl and her hubby, from Australia.
She says she is looking forward to the trip.

It was quite a fireworks display, after all!

We can hardly wait for our next picnic this
summer, which will again be at Fr. Mike's.
There are cabins to rent and dorm rooms,
too! If you want to camp, bring your RV
or tent, there are hook ups for all. We will
announce our next picnic date very soon,
so "stay tuned"!

Karen and Fr. Mike smile for the camera!

Four months ago I was

devastated

when told the

pain I kept telling them

I was

experiencing

(that they

could

find no reason for up unto a

MRI was

finally done) was

called

ostenecrosis, my

hip

bone was

dying

from lack of

blood circulation

and severe

bone marrow edema.

I combed the Internet in my

search

to learn more about

this disease.

One of the

searches

brought me

the

ON/AVN SGIA's Yahoo Site I

lapped up the info like a new

puppy.

Since

that date I have

been

blessed

with a new

online family, a group

that

has a wealth of knowledge,

experience, compassion and

suggestions. You know the

old

adage "walk a mile in my

shoes"

well these folks have

and as I follow

their footsteps

they are alongside of

me to

make my trek

easier.

I, in return, now that I am a

little way

down my journey

have the

satisfaction to be

able to

answer

newbies

questions, to support them

and welcome them to our on-

line

family.

Two of the main mantra's of the group are:

1. BE YOUR OWN

ADVOCATE...

You must be

educated on this

disease

and pursue your

treatment,

second and third

opinions

are needed at times.

Make

sure your doctor is

experienced.

2. EACH PERSONS AVN IS

UNIQUE.

So even though

we help each

other thru our

experiences we

understand that we cannot

expect

to have the exact

same pain,

results,

emotional responses of

others.

Daily I remember you all in

hope,

prayer and thoughts

for a

pain-free day!

inda,

ecatur,

Hi All,

My name is Jennifer and I

have

Osteonecrosis. I

battled Doctors,

Therapy,

and 7 surgeries, on

both

my knee's when I was

diagnosed and sent to

John

Hopkins. On the

Steps of Good

Sam

Hosp.

Baltimore I had a

chance

meeting with a young

woman named Karen who

told

me about

the group.

When I joined I found I was

not

alone, that what was

happening

to me was real

and that people

really

cared. The support group

gave me a chance to ask

questions, answer some,

and

create new

buddies

that I

communicate with

daily. Please

come join

us. It's a great group

with

a lot of help

and

information.

You've gotten

this far! Click on

the link

for the support group and

find us.

We are here to

wish you

a pain free day!!!!

Jennifer in Southern MD

jenkordell1

Living here in the Australian bush, fellow AVN sufferers are few and

far between, but on Thursdays and Fridays (Wed and Thus in the USA)

they all come round my house for a chat. It’s about AVN, but it's

mainly about sharing experiences - both good and bad, having a laugh,

exchanging photos and building our community. So why not come to chat?

You never know who you might meet!

Cheryl in

Well where do I start! I joined the group what seems like a lifetime

ago

for me, but it's only been about 4 years. I am one of the odd

balls that

have AVN (doctors say AVN, doctors say not AVN take

your choice - their

wording basically means the same when you read

up on it) in one joint. To

make it even stranger, I have it in the

shoulder, where most on the site

will have hips or multiple sites of

AVN. Even though I have doctors on both

sides of the AVN

diagnosis, I have stayed with the site because of the great

support I

get from all the members. There are times, I may not be as active

as I normally am, that is when the shoulder is really acting up. Most

with

AVN know that we go through cycles of pain and this can be

expected. Also

other health issues play a role in my life as well.

When I first joined, Marie, Susiemarie,

hil, Karen and many

others welcomed

me with open arms. Even through the years with

the different

diagnoses

they have

been there with me. They have

been there and they understand the pain that I go

through,

understand good days and bad days when it comes to the pain. I

have not had surgery yet, but I do foresee that in my near furture

as I know

my shoulder continues to deteriorate at a faster rate

these days. Yet I

know anytime I need a listening ear I can just e-

mail any of the members

that I have met on the yahoo site and they

are there to listen to me and

respond to my e-mail. They are the

best support group one can find for

dealing with what we have going

on. We don't always sleep at normal times,

so someone is always up

it seems to answer a post. I have even contacted

Marie and Karen

sep

rately and Father Mike, when I needed a shoulder but

wanted

to keep it private.

Barb in Iowa

Disclaimer:

The web pages and message boards at our site are for informational and entertainment purposes only. Material placed on any page or
message board does not necessarily reflect the views of Osteonecrosis / Avascular Necrosis Support Group International Association,
Inc. (“ON/AVN SGIA, Inc.”). The information on our site is provided with the understanding that we are not engaged in rendering
medical or professional medical services or advice.

We assume no responsibility for any choices that you may make for your own medical care. Information included in a message board
should not replace necessary medical consultations with a qualified health or medical professional to meet your individual health or
medical needs, or those of your loved ones. What we share here on our site is from members’ experiences and personal opinions only
and is not to be used as a substitute or to replace your own doctors’ medical advice. You are urged to consult with and to abide by your
own doctor(s) medical advice. We do not verify the information placed on any message board on our site and, therefore, cannot verify
or judge the merits or lack thereof, of any information, suggestions, ideas, opinions, or advice.

Neither ON/AVN SGIA, Inc. nor any ON/AVN SGIA, Inc. agents or representatives make any representations with respect to the
contents hereof and specifically disclaim any implied or express warranties of merchantability or fitness for any particular usage,
application or purpose.

On our site, we prefer to base our message board discussions on only FDA approved treatments, medications, procedures, medical
guidelines, etc. If a treatment, medicine, procedure or medical modality is not FDA approved then we ask you to please find another
resource where you may discuss same.

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By accessing our site, you agree to hold ON/AVN SGIA, Inc., its assignees, licensees, owners, officers and directors harmless from any
loss, claim or damage arising from your use of any of the information and ideas contained on the site, including following suggestions
or advice posted on the message boards/web pages.

The ON/AVN SGIA, Inc.

Testimonials Page

Living here in the Australian bush, fellow AVN sufferers are few and

far between, but on Thursdays and Fridays (Wed and Thus in the USA)

they all come round my house for a chat. It’s about AVN, but it's

mainly about sharing experiences - both good and bad, having a laugh,

exchanging photos and building our community. So why not come to chat?

You never know who you might meet!

Cheryl in