Welcome to Caregiver of Intersex or AIS Support Group. We are glad you found us. We are here for each other and want to provide the much-needed platform for caregiver of intersex or Androgen Insensitivity Syndrome (AIS) Support Group. Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. We are very proud of what the caregivers are doing. We hope that by sharing our experiences we can build support for each other and make this world a better place. At no point are we suggesting that intersex or AIS patients do not have their trauma. As caregivers, we know what patients have gone through first hand, it is very traumatic and our sympathies are with them. It is because of them we are caregivers. So we are thankful for the opportunity. In the long-term, it is in the best interest of all to say the truth, educate and create awareness on this subject.
We invite you to review the mission of the group and provide your valuable feedback.
As per a recent survey, there are 65.7 million family caregivers in the USA and 34% of all caregivers are men and the average age is close to 50 and less than 4% are young to middle-aged and less than 13% are spousal caregivers. Thus making a young to middle-aged, male, spousal caregiver a minority within a minority. In addition, the unknowing caregivers of AIS patients are a miniscule minority and a highly underserved group within spousal caregivers. It is hard to find a precedence or any statistics. As a caregiver, it is critical to have a friend to talk to, a shoulder to cry on, and most importantly, someone with experience in the world of AIS to explain truthfully what was happening to his loved one. We want to welcome and provide a channel for the caregivers – be it family members of AIS patients or their partners or their friends or someone else. There is little information available to caregiver of AIS patients and is often concealed and a variety of secrecy and lying techniques are utilized. This makes it even more challenging to find any good and helpful information for caregivers. As a result, the caregivers needs are either brushed under the carpet or unattended. This can have unintended consequences and we want to build and provide support for the caregivers. Our focus is to provide help during caregiving and life after caregiving. We do not want to risk caregivers becoming patients themselves due to the severe stress and trauma and related diseases. Caregivers have a right to a decent, human life.
We encourage you to come with an open mind and help us build support with sensitivity to all. Please join our community to share your experiences and thoughts. Let us make this a positive experience for individuals to voice their frustrations, thoughts and experiences while finding a source of comfort, knowledge and assistance. Please feel free to contact us if you wish to offer any updates or changes and your valuable feedback is most welcome.