Special
thoughts from the KidComm Email Support Group Members!
Childhood
nephrotic syndrome & other childhood kidney disease in our children
is hard to cope with at times. That's where the KidComm email support
group comes in.
Our
group members have many wonderful things to say about the KidComm
Email Support Group for Parents. We hope their stories touch your
heart and relieve any tension you may have about joining our group.
Erin,
Louisiana USA says: When I first found out that my child
had a kidney disease I turned to the internet to look for support
and information. I found a website about a childhood kidney disease
(NS) and emailed the owners. My son had a different disease but
I could not find a group for that disease. I asked if I could join
the group anyway and they were kind enough to allow me. I will forever
be thankful to Hugo and Wendy for this. The Parent's Place group
(now kid_comm) taught me a lot about kidney disease but the support
that they offered was even more invaluable. Everyone was so kind
and understanding. It was to become my new home; a place I could
go when I was feeling down and a place to go to share some good
news. The most wonderful thing was that no matter what day or time,
I could log on and find someone. I didn't have to wait until the
third Tuesday of the month when I needed someone to talk to. The
members of kid_comm were there for me through my family's journey
all the way while my son's kidneys failed, the surgery to remove
his kidneys and finally his transplant and his life after transplant.
I could not have gone through this experience without my kid_comm
family. Now, I am here to give back to others and to help others
get connected so that they can find a home to go to when they need
it.
Wendy,
Ontario Canada says: When my son was diagnosed with FSGS
there were only 2 sites online that spoke of Nephrotic Syndrome.
There were no other parents in my area that I could speak to, and
of course the hospital couldn't give out any info on other parents.
I really needed to find others in the same situation and hopefully
find some answers or at least be told that what we were experiencing
with this disease was "normal". Through email, I contacted a few
parents who also wanted to share info and experiences. I am so thankful
to the parents who joined and formed our little group! Without them,
Kidcomm and all of the other email support groups associated with
Kidcomm wouldn't exist today. I'd like to thank every person who
has ever been involved with this group. We're a great bunch and
I hope others are helped as much as I have been.
Chris
USA says: When my son was first diagnosed with kidney disease
in Sept. 2001, I felt devastated, alone, and completely lost. I
never dreamed that my healthy child would be diagnosed with a chronic
illness. I remember searching the web for anything I could find
out about nephrotic syndrome. Fortunately for me I discovered Kidcomm
and what a godsend that was. The knowledge I have gained from the
members has been invaluable. As I turned to the group for support
and advice, I felt I could cope with the difficult situation that
I was facing. Suddenly I didn't feel so all alone. Even though I
am surrounded by loving family and friends, having someone to turn
to that is in the same or a similar situation, has made all the
difference. I will always be extremely grateful for this wonderful
group.
Kathy
USA says: When my 12 year old daughter was diagnosed with
nephrotic syndrome, I hit the web. I easily found the KidComm site
which led me to NephCure-and more information and some private advice.
However, I was too concerned about privacy to join KidComm at that
time- which I totally regret. There are no privacy issues with this
site. And to think I missed months of support as my daughter got
worse, stayed out of school and had a biopsy. It was only when I
finally felt past desperate that I joined this remarkable group
of people dedicated to caring for their kids and passing on reliable
information. My daughter is among the lucky (right now and I hope
forever) because her last drug (or the alternatives I tried) eventually
put her in remission- but at the same time, having this group for
support and information from those who have been "through" it or
worse has been a tremendous comfort for me- and saved me from several
weekends of worry.
Christine
USA says: My son was diagnosed with IgM Nephropathy. Luckily
for me, my Mother-In-Law found this group and told me about it with
in the first two weeks of my son's onset. I joined the group and
sat back and just read what people were saying. I latched onto one
of the women in the group who became a life line for me during the
worst of the hospital stay before the biopsy. Once I became more
computer savvy, I felt comfortable writing to the group as a whole.
Such a load was lifted from my heart and soul to have found a group
of people who knew exactly where I was mentally and emotionally.
Hearing from others that the first couple years are the worst but
that there was light at the end of the tunnel, kept hope in my heart
that things would get better for us. Belonging to this group has
been a journey for me. At first I was new and needed so much support
and advice. Later I could begin to give to the group as much as
I needed from it. Later still I became strong enough in my journey
that I could mentor others coming in the group just like the woman
who was there for me. I never felt alone because I had friends from
all over the world right at my fingertips. Friends I didn't need
to explain medical and emotional things to. I could just write and
they understood in a way even my family could not. I gained confidence
and courage from this group. That confidence has given me the ability
to be active in many hospital committees working toward making our
hospital better for every child who comes in. When life has thrown
curve balls at us in the last three years, I have had many shoulders
to lean on and help carry me through. This group is a Godsend and
I am thankful to have been able to be a part of it.
Amy
USA says: I am a new mom- to twins! - and my son Noah was
born with kidney problems. He suffered a left renal vein thrombosis (RVT)
at birth, and six days later, his right kidney developed RVT. His
IVC also developed large clots and is completely obstructed. He
suffered acute renal failure and a recent ultrasound shows cystic
dysplastic kidney disease. Though he has shown dramatic improvements,
he is followed closely and his future kidney functioning in uncertain.
KidComm has allowed me to feel that I am not alone in my fears and
worries, and that there is information and support out there.
Stacy,
USA says: Kidcomm is not just a website to me, its my second
family. I never imagined a group of people that have never known
each other prior to our children's illnesses could be so close.
At the end of the day I know I have a place that I can share my
thoughts, and it's a wonderful feeling. Kidcomm has a place in my
heart now and forever!
Julie,
USA says: My daughter Olivia was diagnosed in November
of 2002 with Minimal Change Nephrotic Syndrome. I spent the first
year after her diagnoses trying to find a support group that had
other parents with children going through the same thing that we
were. Finally in the fall of 2003 I came across the Nephcure website
and was so thrilled to find a place where I could get info about
this disorder. In the spring of 2004 I became a member of the Kidcomm
site, a wonderful support group of parents going through many different
kinds of kidney diseases and disorders. This group has helped me
so much. If I ever have a question about my daughters treatment
or side effects that she is suffering from all I have to do is ask
and the response is amazing. My daughter is currently in a med free
remission. The thing with this disorder (mcns) is that we don't
know how long it will last. This is very stressful for us, but the
members on this site have helped so much. We are truly a family.
It's just amazing to me. I have never met any of the parents in
this group but really do consider them my friends and family. They
are here for me whenever I need them for advice or just a good laugh.
I don't know what I would do if I didn't have this group for support.
It has truly saved my sanity.
Sue,
USA says: This place definitely is wonderful. It is weird,
but even with all that is going on, it feels like a huge weight
has been lifted off my chest. I can breathe again, I can dream about
my son's future again, and I have found the reassurance that I needed
to give me the strength to get through a lot of difficult days.
Thank you for the support.
Arlene
- New Jersey, USA says: When my son went to the ER with swelling, I expected to hear that he was having some type of allergic reaction. Instead, I was told it was "nephrotic syndrome". The doctors tried to explain what this was, but it didn't really sink in. My son was admitted, had a biopsy, and we found out he had FSGS. Everything was such a blur. A
barrage of tests, medications, and medical terminology was being thrown at us. As I started "googling" this disease, trying to find information on what to expect, what is the prognosis, what is this thing, etc., I came upon a site called kid_comm. Kid_comm has kept me sane. Not only are the people in this group amazing, but they are all experiencing the same thoughts, feelings, fears, hope and joys that I find myself facing. Whenever I have a question about what to expect, what is this medication for, how do I work with the school, or how do I get through the day - there has always been someone here to help and offer their experience and/or support. I am so thankful I found this group. I truly don't think I would have be able to handle these last few months without these wonderful, friendly, warm, caring people.
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