My Child Doesn’t Have PKU or an “Allied Health Disorder” – So Why Do I Keep Hearing About Both?
- Written by Christina Sciarrotta – President, PKU Organization of Illinois
When my son Alex was diagnosed with PKU nine days after he was born in August of 2003, I did what all parents whose infants have been diagnosed with a rare disorder do: I set about to educate myself. One of the first things I discovered was the large support network for PKU in Illinois – including a structured not-for-profit support organization. One year later, I attended a conference in Michigan in which the topics and audience were not solely related to PKU, but other similar, yet rarer disorders. That was my first exposure to some of the stories and details around other metabolic disorders – or what we’ve come to call Allied Health Disorders.
I joined the PKU Organization of Illinois as a Board Member in 2005 – the same year our by-laws were revised to expand our membership guidelines to include not only individuals with PKU and their families, but now including individuals and their family members with the following inborn errors of metabolism: Urea Cycle Disorder, Maple Syrup Urine Disease, Homocystinuria, Tyrosinemia, Glutaric Acidemia – Type 1, Methylmalonic Acidemia, Propionic Acidemia and Organic Acidemia. PKU is the most common of this group.
As part of this community, you may have heard about the PKU Organization of Illinois or our events in one form or another and been confused about what an “Allied Health Disorder” is and how it applies to you. When the PKU Organization expanded its focus to the eight other inborn errors of metabolism, the term we used to refer to those eight was “Allied Health Disorder.” We use “Allied Health Disorder” in many of our communication forums and event marketing to refer to any of the eight inborn errors of metabolism listed above.
The larger question of course is why did we expand our focus and how does it benefit you? To answer to this is simple and complex.
The reason why our organization expanded its focus is simple – as the most common inborn error of metabolism, we have a fairly large community. One large enough to build a successful and effective local support organization (many other states have similar non-profit PKU support organizations). While MSUD (and some of the other conditions) have national support networks, it doesn’t have a local support group to take advantage of closer resources on a more frequent basis. And both Illinois genetics clinics we work with recognized similarities in support needs across PKU and the other rarer conditions. With the support structure already established, it made sense to expand our organization and ultimately our network of resources, to be able to assist families dealing with similar challenges.
So how does this benefit you? That answer is more complex. While we’ve been working hard to reach out to the “Allied Health Disorder” Community to let you know who we are and what we do, we haven’t always answered the question of how specifically we can support you – or highlighted which of our events or resources apply to you and which may not. Because - while we have similarities, there are also differences. We’ve been working hard this year to tailor our communications to the Allied Disorder Community in a way that answers these questions, so ultimately we can support you not just in our by-laws, but in a tangible way.
The main thing you should know about the PKU Organization of Illinois is that our charter is two fold – to raise funds for research and to provide community support. Our standard yearly calendar of events in Illinois includes a New Parent Coffee, Low Protein Cooking Classes, Weekend Camp and an Annual Meeting which features speakers and breakout sessions on metabolic disorder related topics. All of these can be great networking and education resources for you. We’ve also recently aligned with the newly formed National PKU Alliance. NPKUA is fighting hard for a Food Equity Act in Washington, which includes 29 inborn errors of metabolism. Our help supporting NPKUA with their vision will ultimately benefit the entire inborn error of metabolism community.
Please visit our website at www.pkuil.org for more information on us, our vision and events. We’ll continue to provide specific information on how we can support you and we look forward to seeing many of you at our Annual Meeting in November.