Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
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I have a question regarding follow up care for the infants born to mothers with pemphigoid gestationis. I had a very severe case of PG during the 2nd trimester of my 1st pregnancy. I was on 100mg of prednisone to try to get a handle on the fast progression. My son was born 2 weeks early with fetal growth retardation, weighing 2 lbs. He was placed on steroids as well. What are the long-term side effects for the infants? At the age of 32, he found out he was sterile. I cannot find ANY research on the children born to the women of this rare disease. Does anyone know who I can contact to ask about this? See answer
My daughter has been diagnosed with pemphigoid gestationis 5 weeks after giving birth. Do you have any information that can provide information on this rare autoimmune disease? Are there any clinical studies currently being performed? See answer