Welcome to the first post on AboutNDI.com, soon to be TheOTHERdiabetes.org. The goal here is to provide up to date information about Diabetes Insipidus. If you are viewing this blog you have been invited through link to what is called a “hosting website” which is online for professionals and patients to review and contribute information before the actual information/fundraising campaign begins, and the proper domain address becomes active. You have been invited because you have the ability to make a difference. This website has not been made “live” or “launched” yet, therefore you will most likely catch it changing regularly and your opinion matters. There may be gaps or features that do not work yet, as your contributions are important for the success of this website.
This will be a place for parents to share their stories and give advice. We encourage Doctors and Dieticians familiar with Diabetes Insipidus to contribute and share their approaches as they vary tremendously around the world. The ultimate goal is to begin on-going active fundraising that encourages community participation so that we can bring awareness to this rare disease as well as support for families in need.
This area of the website is open to anyone that wishes to submit anything you feel the world needs to know about Diabetes Insipidus, and is open to all types of DI and will be categorized by the nature of the content and also moderated prior to posting. Initially upon the beginning of this website, the intention was to only focus on Nephrogenic Diabetes Insipidus because of the age and complications with growth due to the sheer volume of water that these children drink. As networking and research continued it became apparent that isolating one type of Diabetes Insipidus would be contributing to the biggest problem faced by those with Diabetes Insipidus, no one knows it exists. This lack of awareness is what has been the source of most complications in all of our lives.
The rareness of this disease has made the lives of those affected by Diabetes Insipidus very difficult. There is no active support from Kidney foundations or Diabetes foundations for families and very little for studies, in fact several of these non-profits don’t even acknowledge Central DI or Nephrogenic DI or respond when asked why. Information regarding Diabetes Insipidus has to be aggressively searched for and is often out dated or repetitive or written in such a way it is nearly impossible for the average person to understand. We live in a time of innovation. As gene therapy evolves, and promising new studies for new medications begin there’s hope for the next generation to live simpler, longer, healthier lives.
Interested in helping or contributing? You can do that here.