International Obsessive Compulsive Foundation conference

Recently I was contacted by Denise Greud Grubbs, a facilitator of the PANDAS/PITAND support group in Williamsburg, Virginia. She will be attending the International OCD Foundation conference in California in hopes of raising awareness about Pediatric Autoimmune illness Associated with Streptocci(PANDAS DISORDER).

I belong to the PANDAS/PITAND online support group and have learned a tremendous amount about the disorder from her, personally, as well as from the website http://www.pandas-pitandawareness.org. Since our oldest son had a major regression in Octobor of 2009, I have researched about PANDAS DISORDER. Both of our son’s have a diagnosis of PANDAS DISORDER. It is a very difficult road. I have lived with PANDAS for almost 3 years and it is crippling our children with regression and debilitating their immune systems.

When I first suspected the disorder in my oldest son, there was very little information on the subject. Now, Dr. Caroline Cunningham’s research has been in the news often. The once rare disorder is affecting many more children across the United States as well as internationally. We have a growing number of cases in the eastern United States. Research needs to continue and funds need to be raised.

She will be presenting at the conference and asked me to send photo’s of my boys for sharing our stories and connecting a person to the story. I am eager to help raise awareness to this often crippling disorder. I have many pictures of the boys sick and forlorn. If my children’s suffering can help improve the quality of care and research for future children, I am more than happy to share our story. I hope that people will begin to understand more about the disorder and be more empathetic when seeing a child meltdown and rage.

A child with PANDAS DISORDER will often present like a child on the autism spectrum. It is equally important to educate on both of these disorders as the numbers of both continue to grow. I look forward to hearing how the IOCDF conference goes and new developments in PANDAS research. I will continue to update on research and education on PANDAS DISORDER.

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