It’s a very simple goal : Health Care Providers need to change the messaging to caregivers from “It’s not your business to be here between me and my patient” to “I am sorry, even though your loved one, the patient, has requested for your presence as a caregiver, I respectfully decline and I suggest you […]
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Caregiver Rights – Its Time For A Change
February 13, 2012Top 10 Tips For Caregivers of Androgen Insensitivity Syndrome (AIS)
February 10, 2012Caregivers of Androgen Insensitivity Syndrome (AIS) are an underserved group. They are a minority within a minority. Often as with other minority issues, resources are hard to find. For Caregivers of AIS, this is a double whammy as they are a minority within a minority. Given the unique situation of AIS, the relationship of the caregiver […]
Can Androgen Insensitivity Syndrome (AIS) Patients Be Parent?
January 30, 2012This is a fundamental birth right of every human – to procreate. However, it is not in each individual’s hands. Some people who are biologically capable of having kids choose otherwise for personal reasons. For some other people, its a matter of circumstances. For Androgen Insensitivity Syndrome (AIS) patients, its a matter of reality. They cannot […]
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To Whom It May Concern
I support the objectives of the Caregivers of intersex or AIS Support Group:
1. Inclusive palliative care approach for patient and family including caregivers and children.
2. Education and spreading awareness is a better long-term solution for all. The concealment-based approach has to stop.
3. In the best interest of the child, conduct a scientific study to evaluate if a "waiting period" should be established to be the primary care provider for infants immediately after adult AIS or Intersex patients :
a) have sex reassignment surgery.
b) have just started treatment with Hormone Replacement Therapy (HRT).
c) and are overcoming severe personal trauma and crisis.
4. All caregivers should be assigned an independent advocate/counselor to explain the condition and its effects to prevent them from becoming a patient.
5. Caregiver feedback should be sought in devising the hormone replacement therapy and associated behavioral symptoms of the AIS patient involving severe trauma, depression, and crisis.
6. Seek medical data or scientific basis to do sex reassignment surgery and hormone replacement therapy during a marriage when the intersex patient is already in their 20s or 30s.
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