Greetings, all. I’ve been living with central DI for almost 40 years, and I’ve never met anyone else with the condition. As a matter of fact it even surprises me when I come across a doctor who knows what it is. Thanks to a terrifc doctor and DDAVP, I’ve been able to lead a pretty normal life.
Hi everyone! We live in Australia and our son Hunta (20 months at June 2007) has DI and Panhypopituitarism secondary to a Craniopharyngioma brain tumor. I am interested in how others manage and care for their children who have this condition as we live 4 hours from our endo. I can’t wait to check the posts everyday and see how everyone is managing!
I too have DI. plus a number other problems. It would be very interesting to be in contact with others with the same problem('s).
Hi, my name is Heather and my daughter was diagnosed with central dibetes insipidus last year when she turned three. I am just curious and want to learn more about it…
My 2 year old daughter with LCH was recently diagnosed with DI. Anyone have a similar situation?
I have diabetes and I am just trying to find out more about it.
Dr. thinks i have DI after a arginine vasopressin test of less came back with a result of less than 1. Pregnant & due in 3 weeks. Extreme thirst brought on the test.
i have CDI and want know more about future treatment
I have had DI for about 32 years. I was diagnosed about 10 months after the birth of my first child. I have never met anyone else with this disease. Now that myh children are grown and gone from home, I would like to research and do more to get wisdom and knowledge about DI. I hope to attend the DI Conference in August. Presently, I reside in Lubbock, Tx.
had gestational DI 13 years ago.
hi I’m thirsty1
i am pan hypopuitary
sence 1992. i am 40 years old female.
DI sufferer looking for some support
My daughter and I both have CDI. I’m interested in finding out more about other people who have the condition. I’m 44 yrs. old and don’t tolerate the heat very well. Any others like that? I take DDAVP tablets. Hormone and thyroid tests are normal and my weight is normal.
Thanks!
I’m interested in this group because after 15 years of suffering with this disease and finally diagnosing myself, I found a physician that took me somewhat seriously and tested me and prescribed ddavp and I’m a new person. I still have a bit of frustration due to such a difficult diagnoses and having been married 18years and three children 17,14-(this is when all this appeared) and a now 4 yearold…I’ve had this life altering disease most all their lives…I’m still happy to now have help! Thanks!
I have has DI since I was 6 years old and am interested in hearing from people with the same condition.
30 yo male with CDI… have had it since 10 - but prob since birth. idiopathic. living in nyc!
My 8 year old daughter is in the process of being diagnosed with DI. It runs within her father’s family. I believe shes had it since birth, but have been blown off by 3 doctors as a paranoid mother. Finally we’ve found one who listened and has referred my daughter to a Paediatrician and Endocrinologist.
24 year old female. Diagnosed with DI at 17. Finally trying to connect with others who understand what I am going through and can provide insight to things that I don’t always understand my self.
Hi, my name is Kim, I am 27 years old, I am a stay at home mum to Rebecca 7, Sophie 5, Angel thomas born sleeping 21 May 04, 4 angel babies and Timothy 16mths. I live in New Zealand and I was diagnosed with DI when I was 9, so have lived with it for 18 years. I would love to get to know someone else who has DI.
Hi everyone,
My eight year old daughter was diagnosed in July 2007 with DI. She is well controlled with DDAVP melts. We’ve just undergone her second MRI and so far we think it is just idiopathic. At the moment there is slight concern about her Growth Hormone levels so we are in the process of having some repeat testing done there. We live in Ontario,Canada and would love to talk with other people who can shed some insight to what living with DI is really like, perhaps recommend some resources… At this point we are still compiling our list of questions for her next doctor’s appointment. So little is known about this disease. It seems like EVERYBODY has heard of Diabetes Mellitis or knows someone with it…We know absolutely nobody with DI… I’ve been trying to find a local support group but I’m having difficulty even finding that! The post about water obsession really struck a cord with me and made me chuckle… Something only those of us dealing with DI could appreciate!! Thanks a lot for the camaraderie … My name is Linda.