The busy mother of seven children, who was diagnosed with lupus five years ago after years of seeking out a diagnosis for her symptoms which also included a swollen face, pain and fatigue, proved her instincts were right.
Doctors at Children’s Hospital of Michigan diagnosed ChyAnn with lupus, a chronic, autoimmune disease that causes the immune system to mistakenly attack the body itself. It can affect almost any part of the body, and often many parts at the same time including skin, joints and/or organs inside the body.
ChyAnn, who has been treated by specialists on staff at Children’s Hospital of Michigan including Matthew Adams, M.D., chief of Rheumatology and Rudolph Valentini, M.D. nephrologist and vice president, Medical Affairs, has been a trooper since being diagnosed with the disease.
“ChyAnn is a courageous young lady who has kidney involvement with her lupus, or lupus nephritis,” says Dr. Valentini. “Children and young adults with lupus nephritis are required to take a combination of medications to control the inflammation caused by lupus that is responsible for causing the kidney injury. Her lupus nephritis necessitates close follow-up and laboratory monitoring by her rheumatolgist and nephrologist. ChyAnn and her parents have worked cooperatively with the Vascultis Clinic team, and have undoubtedly learned a great deal from their experiences,” he adds.
Bridget says she is quite proud of her daughter, who has taken her lupus diagnosis in stride and has used the opportunity to help others who may be in a similar situation.
“I invited ChyAnn to attend an adult lupus support group with me so that we can both have support and resources for this disease. The first thing ChyAnn noticed was the support group only had adults and no children or teens,” says Bridget. “Thanks to the support of Dr. Adams, Dr. Valentini, Children’s Hospital of Michigan and the Michigan Lupus Foundation, we now have a support group available for children and teens in metropolitan Detroit who have lupus.”
ChyAnn has also developed her own blog called Lupus Buddies. She also encouraged her girl scout troop to raise more than $1,000 for lupus at the last annual Lupus Walk. The troop plans to participate this year as well at the Detroit Zoo on August 10, 2014.
“These efforts are a wonderful contribution to the lupus community, and we are very excited to be able to promote ChyAnn’s support group for children and young adults with lupus,” says Dr. Valentini.
“We hope the blog and support group will be a great resource for children and teens who may feel isolated. ChyAnn hopes these resources will empower other teens and raise awareness of this disease,” says Bridget.
The Michigan Lupus Foundation now offers the first Pre-Teen and Teenager Support Group, in metropolitan Detroit. The support group is held on the 4th Tuesday of each month in Rooms 2004 and 2005 at the Children’s Hospital Specialty Center, 3950 Beaubien, in Detroit from 5:30 pm – 7:00 pm. The group is aimed at 10-18 year-old participants. There is no-cost to attend the support group. For further information on the support group contact Lisa Radtke at lisa@milupus.org.
For further information on lupus visit http://www.childrensdmc.org/pediatricrheumatology.