First Fundraising Campaign
May 23, 2017
To celebrate the launch of theotherdiabetes.org, I would like to take a moment to welcome all of our new members! This is a new website with the sole purpose of bringing awareness to this over-shadowed disease and this is only the beginning.
You can’t launch a new organization without fundraising! Over the next three months the first goal is to send brochures and information to hospitals around the globe. The first fundraising campaign is being hosted by bonfire.com in tribute to the children of Diabetes Insipidus, however funds are to benefit the disease as a whole.
The T-shirt campaign will run for 21 days, and these shirts will only be available until June 10th. When the campaign is complete the estimated ship date is for June 21st. Bonfire.com has a reputation in the fundraising community for having the best quality of shirts and an overall beautiful product. There are different styles to choose from such as t-shirts, v-neck, tanks, youth shirts and female “slim fit,” in a variety of colors. Please spread the word and buy a shirt if you can!
New Tech – Hydration Monitor
May 14, 2017
Anyone with Diabetes Insipidus knows the guessing game around D.I. How hydrated/dehydrated am I? Until now, the only way to know an accurate depiction is to test the bloods sodium levels. Patients with DI must have blood drawn and tested either with a ISTAT meter or by a lab in a hospital. This is not a procedure you can do from home and requires trained professionals to perform this task. However while doing research and contacting electronics engineers to begin developing some kind of at-home meter to read sodium levels, the new red-light technology was brought to our attention. What this technology does is sends “red-light” into the cells and gives an accurate real-time depiction of hydration. The best part is that to get these readings, it requires no needles. Further research into this subject brought us to a project that was started on kickstarter that was very successful. These monitors are already going into production, with a release date in August. You can pre-order these monitors online right now. This is very exciting news. Until now we have not known how a person with DI’s hydration levels fluctuate throughout the day. We have had to guess until that next blood draw.
Recent Studies regarding CDI and NDI
May 1st, 2017
This study in particular is being performed out of Switzerland and is focusing on how Diabetes Insipidus is diagnosed. As most are aware, when they diagnose someone with DI they are given a water deprivation test. This study is focusing on other methods that may be more effective and less traumatic to confirm diagnosis of this condition. Normal saline solution will cause a person with DI untreated to become dehydrated. When treated for dehydration, it is important that the saline solutions sodium content is reduced to .22%. When given this normal saline solution the sodium levels in the body tend to increase immediately. The purpose of this study is to confirm the efficiency of this method so rather than deprive water for 24 hours they could administer an IV and run the test for less time. This study is running both water deprivation tests and IV Saline Infusion and is comparing these results to verify the accuracy of both methods. You can read the study details here.
Recent Studies for NDI
April 29, 2017
In a study review that was published on April 29th 2017 for NDI it was concluded that there is a need for there to be some form of screening process so that those affected by congenital NDI are diagnosed early in life to prevent any damage that occurs to their bodies that is permanent from severe dehydration. [source]
“In congenital NDI, polyuria and polydipsia are present from birth and should be immediately recognized to avoid severe episodes of dehydration. Unfortunately, NDI is still often recognized late after a ‘diagnostic odyssey’ involving false leads and dangerous treatments.Once diagnosed, appropriate treatment can be started. Moreover, laboratory studies have identified promising new compounds, which may help achieve urinary concentration independent of vasopressin.” [source] However after contacting Office of Patient Recruitment at the National Institutes of Health (NIH) Clinical Center, they stated: “Currently we are not conducting any studies at the NIH Clinical Center for Nephrogenic Diabetes Insipidus.”
On the website for rarediseases.org it was also stated “Researchers are studying the use of pharmacological chaperones as potential treatments for individuals with X-linked nephrogenic diabetes insipidus.” [source] Many of us that saw this announcement were pretty excited because the medications currently used are by no means a cure and patients still have to consume large quantities of water to achieve balance, so I contacted the Professor of Medicine and Physiology and Renal Division Director, Executive Vice-Chair of Medicine, Emory University School of Medicine and he stated “There are no current human studies that I am aware of. We are doing pre-clinical studies in rodents.”
However there is some information posted to Clinicaltrials.gov regarding previous and ongoing studies and one study mentions the drug Metformin. The purpose of this study is to see whether or not the drug will concentrate the urine and reduce polyuria. This study was started in 2015 and is estimated to conclude in June 2017, and the study states that they are still “recruiting” on the website here.