June 23, 2021: XLH Awareness Day

WHEREAS,  X-linked hypophosphatemia (XLH) is a lifelong genetic disorder of the bones and teeth characterized by low levels of phosphorus in the blood; and,

 

WHEREAS, XLH affects about one in 20,000 newborns according to the National Institutes of Health (NIH); and,

 

WHEREAS, the disease can cause serious symptoms such as weak and soft bones, short stature, bone and joint pain, and dental abnormalities that significantly impact the lives of those who suffer from XLH and their families; and,

 

WHEREAS, patients affected by XLH and their families often encounter a variety of challenges outside the illness itself, including difficulties in obtaining accurate and timely diagnoses, finding effective treatment options, and affording the cost of those treatments; and,

 

WHEREAS, XLH is not currently a curable disease, but dedicated researchers around the world continue their efforts to better understand the genetic mechanisms that underly XLH with the hope that a cure will be found one day; and,

 

WHEREAS, The XLH Network, Inc. (www.xlhnetwork.org) is a non-profit organization dedicated to supporting caregivers and patients affected by XLH and providing up-to-date information on diagnosis, treatments, and the latest research; and,

 

WHEREAS, this day is designated to raise awareness of the disease, provide support to patients affected by XLH, and promote continuing research to improve treatments;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim June 23, 2021 as XLH Awareness Day in Michigan.