Making connections with people who can provide support and guidance is a vital piece of the MMIHS journey. Sharing ideas and information, while offering guidance and understanding is a tremendous source of help and comfort. Below are some of the organizations that MMIHS families have found to be useful.
The Megacystis Microcolon Support Group is a Facebook group that was created in 2014 by Susan Demrick Koprucki, the mother of a daughter with MMIHS. Currently there are about 50 members comprised of MMIHS patients and their family members.
Given the rarity of the syndrome, this group is an invaluable resource to those affected by it. If you or a family member has MMIHS, you can request membership by visiting the page.
Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments. NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.
The United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery. Over 750,000 Americans are living with an ostomy, and over 130,000 new life-saving ostomy surgeries occur in America yearly. You need answers—so you’ve reached the right site for information, help, and support.