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Welcome to Inspire!

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Active journals

Chapter 2 - My Mom's surgery in 1996

motorgirl85
  • By motorgirl85 · New reply November 15, 2009
  • 4 replies
  • This will not be a very detailed recollection because its already been 13 years ago. Two years after my first surgery my Mom came down with a flu that she just didn't seem to be able to overcome. She ...

3 years since last TRAPS fever!

althea
  • By althea · New reply November 15, 2009
  • 8 replies
  • My son is now 19 years old and in his second year of college. He takes no meds. He does still take a Fish Oil capsule daily. No fevers, no TRAPS symptoms now for 3 years!!! He lived in a college dorm ...

what do i do?

a_powerfully_mind
  • By a_powerfully_mind · New reply November 14, 2009
  • 19 replies
  • i just found out that i can't play sports any more and i have nothing to focus all the bad energy on ...

Kids with FMF

Mary2
  • By Mary2 · New reply November 13, 2009
  • 13 replies
  • Hi everyone, I am a 29 year old mother with a 4 year old son with FMF (Familial Mediterranean Fever) . My husband and I both don’t suffer from FMF, but wish every single day that I had the disease instead ...

Chapter 1 - My first surgery in 1994

motorgirl85
  • By motorgirl85 · Posted November 10, 2009
  • 0 replies
  • When I was an 8 year-old and going on 9, I remember a time in which I was vomiting a lot and complaining of a stomach ache all the time. So my Mom took me to my pediatrician. After checking my stomach ...

Introduction

motorgirl85
  • By motorgirl85 · Posted November 10, 2009
  • 0 replies
  • Hi my name is Jennifer Woods, I would like to say that I'm your typical 24 year old but I'm not due to Carney Complex (also called Carney Syndrome). I would like to share my personal and medical history ...

Inspire members featured

Brian
  • By Brian · New reply November 4, 2009
  • 29 replies
  • Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

HIDS

mommymanda
  • By mommymanda · New reply October 20, 2009
  • 8 replies
  • Payton is now almost 4 and it seems like he just keeps getting new symptoms. It feels as if he never gets a break! As of right now we are on Kineret injections during episodes for 3 days and also on Humira ...

Daughter diagnosed with TRAPS

silky
  • By silky · New reply October 8, 2009
  • 9 replies
  • My almost 3 year old daughter has been diagnosed with TRAPS R92Q mutation and is being followed by Dr. Kastner ...

My Story- as of 6/20/09

hannahmontoya
  • By hannahmontoya · New reply October 7, 2009
  • 6 replies
  • I'm your typical 16 year-old girl that has gone through some pretty atypical stuff. If there's anything that I've learned from going through what I've gone through, its that the only way to take life ...

SAPHO

teenager13withSapho
  • By teenager13withSapho · New reply September 20, 2009
  • 1 reply
  • 08/17/09 I was diagnosed with SAPHO finally today. I was sick for 2 days in March and after that my life has gone down hill. I lost 28 pounds,got very bad acne and now I hurt really bad in my ankle and ...

what do i do?

a_powerfully_mind
  • By a_powerfully_mind · New reply September 16, 2009
  • 10 replies
  • So on monday i had this sharp pain in my gut were my tumor was when i had cancer i told my dad on wednesday since it was getting worse and i also said that it is harder than it once was. He said to tell ...

problems again!

afields90
  • By afields90 · New reply September 13, 2009
  • 1 reply
  • Dylan was doing so well, we had to homebound him from school in March due to he got so ill he missed a whole month of school. For six months he only had one episode. He is now a freshman in high school ...

New to Inspire

Mom_of_SAPHO_child
  • By Mom_of_SAPHO_child · New reply September 9, 2009
  • 5 replies
  • Hi there everyone. This is my first journal and I'm really not sure what to write but here goes nothing. I am the mother of a six year old boy that was diagnosed with SAPHO Syndrome in April, 2008. The ...

Blue Mommy Van

JLH1
  • By JLH1 · New reply August 31, 2009
  • 1 reply
  • Hi friends. I wrote the following essay for our daughter's CarePage website (www.carepages.com key word AshleyHendrick), but decided to post it on this site as well. I am guessing there are many of you ...

Guestbooks are now live!

TeamInspire
  • By TeamInspire · New reply August 15, 2009
  • 6 replies
  • Hello everyone, Last week we mentioned that we'd be adding guestbooks to Inspire in the near future, and they are now live! We're very excited about this feature and hope you enjoy it. To check out your ...

Scheduled maintenance this evening

TeamInspire
  • By TeamInspire · New reply August 12, 2009
  • 13 replies
  • All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...

Nomid

mikeandshannon
  • By mikeandshannon · New reply August 3, 2009
  • 1 reply
  • My 11 month old daughter and has had quite the journey in her life so far. It started at 3 1/2 weeks when she was admitted to the hospital for failure to thrive. After numerous tests,it was determined ...

Time to return but torn up about leaving my Mom in ICU

Mom_of_SAPHO_child
  • By Mom_of_SAPHO_child · Posted July 27, 2009
  • 0 replies
  • Here I am 5 days before we have to leave to take our son back to the NIH and my Mom is in ICU. I am so upset about having to leave her but I don't have a choice. I have nothing packed, no shopping done ...

My grandson's birthday

Hindustani41
  • By Hindustani41 · Posted July 16, 2009
  • 0 replies
  • Please see the photographs on facebook on my son's page: Sanjaykjindal ...

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