[last updated 11 Dec 2006]
This section provides details of specialist clinicians in various countries whom we believe offer an enlightened and forward-thinking approach to treating patients with AIS; doctors who are not only clinical experts but who also have a caring and humanitarian attitude.
First, a message to any clinicians reading this. Many AIS patients have had to resort to furtive visits to medical libraries in order to obtain the information about themselves that has not been forthcoming from their doctors, and have been extremely stigmatized by the way in which our condition is described in the medical literature - and sometimes during consultations. A CAIS adult wrote:
I hate going to the doctor and getting blank stares when I tell them I have AIS, even when I spell it out--"androgen insens...." And even when I revert to "testicular feminization" they don't have the correct details for the correct syndrome. A senior resident I saw today (______ is a teaching hospital) thought I'd had a uterus and a dual set of gonads--ovaries and testes. When the head of the department (one of the top urogynecology experts) came in he didn't recognise "androgen insensitivity'" either but knew much more about the medical details when I said "testicular feminization". "Good Lord, how long has the name been changed?" he said. I hate the feeling that a bunch of doctors are going home tonight to drag out the textbooks; and with young doctors I hate the slightly shocked look when they finally do understand that it's an intersex condition.
I now find it useful to make sure that a new specialist knows ahead of time that I have AIS, before I come in. When I have to see a new one, I call ahead and ask to speak to the nurse when I make the appointment. I tell her I have AIS and say it used to be called testicular feminization but patients find that term very offensive. I make the nurse or receptionist take a very detailed message about my having AIS and ask if the doctor can call me back to confirm if he or she has ever had an AIS patient before. It prepares them (the nurse has no clue what I'm talking about but the message seems to get passed on clearly) and also warns the doctor in advance of my preference in terminology. I usually get a call back and it gets the awkard moment of recognition out of the way on the phone--where I can't see the slack-jawed, bug-eyed, dumb-ass look that comes over most of them, until they finally connect 'AIS' with the old term (testicular feminization), and with testes, XY chromosomes, etc. Residents are especially good at this facial expression :-)
Another CAIS adult wrote:
I have not been to a doctor in close to a year now because my doctor at ______ (a woman) moved to ______. The hospital was supposed to, but has not yet, hired a new woman repro[ductive] endo[crinology] doctor..... I called and found out there won't be a woman doctor starting until July and I didn't want to wait that long so I agreed to see a male doctor for now. I had spoken to this guy before--not my type of doctor at all--very rushed sounding, not sensitive. He says to me "Oh, I was just giving a talk yesterday on the role of androgens and libido and someone asked me about people like you (yes, that was the phrase) and whether they have a good libido. So.... do you?" I explained that while I was satisfied with my libido it was a bit like asking someone in New York if it was cold there--while they might think it was cold, it might actually be warm in comparison to Alaska or Siberia--they would only know their own experience, since there's no definitive measurement for this. He responded "Oh, yeah I told them the tf's (yes that's what he called us, and he used the abbreviation, tf's) didn't have a problem with libido."I was in such shock that he would use this term, I literally was too shaken to respond in any kind of way so I let it slip by... It's so disheartening to go through trauma every damn time I try to go to the doctor.
In light of this, could we urge medical practitioners to please read the following articles, in our journal/newsletter:
"A Mother's Story" in ALIAS No. 7
"Learning by the Book" in ALIAS No. 9
"Reading the Words" in ALIAS No. 9
"Hearing the Words" in ALIAS No. 9
"Saying the Words" in ALIAS No. 9
"The Power of Language/Culture" in ALIAS No. 9
"The Mother of all Questions" in ALIAS No. 14
"Desperation at the Docs" in ALIAS No. 14
In particular, please note that AIS women do not like being referred to as 'male pseudo-hermaphrodites' or as having 'testicular feminization syndrome', whether in the medical literature or to their face. These terms should be considered obsolete. Please use the more accurate and much less stigmatizing term 'androgen insensitivity'. Please also appreciate the difference, from the CAIS patient's point of view, between being referred to as 'a genetic male' (unacceptable - the use of 'male' as a noun implies that we are men) and being described as 'an XY woman' (acceptable to most patients - XY objectively describes the actual shape of the sex chromosomes.... and we are women).
The support group is collaborating with two groups of clinicians in the UK to develop multi-disciplinary centres of expertise for the care of patients with AIS and other rare conditions similar to AIS. We are also helping these teams to undertake research studies on AIS (see Research Studies).
Dr. Gerard Conway and colleagues have set up a clinic for rare disorders like AIS, MRKH and Congenital Adrenal Hyperplasia (CAH) in which affected patients can all attend on the same day (so can meet each other and 'compare notes') and during a single visit can see an endocrinologist, a gynaecologist and, if required, a psychologist.
This stemmed from a meeting on 6th Aug 1997 at the old Middlesex Hospital in Mortimer St, London W1, to discuss the development of multi-disciplinary clinics for XY female patients. Present at the meeting were Drs Gerard Conway, Sarah Creighton, Melanie Davies and Lih-Mei Liao, together with seven representatives from AISSG UK and two from the support group for Congenital Adrenal Hyperplasia.
On 17th March 2000, the clinicians held the first of an occasional clinic 'Open Day', to which all their XY women patients were invited. Clinicians gave presentations on medical/psychological aspects, AISSG representatives talked about the role of the support group, after which the patients were able to have private consultations with the clinicians of their choosing. Several similar open days have been held since then; for AIS, and for other conditions such as Swyer's Syndrome.
The clinic is now known as The Middlesex Centre (a reference to its origins in the Middlesex Hospital, which was vacated in 2005/6 when the new UCL Hospital complex opened in Euston Rd.)
For a link to the web page for the The Middlesex Centre clinic see Links to Other Sites.
"Report on RSM Symposium" and "Middlesex Hospital Approach" in ALIAS No. 2
"Draft AIS Patients' Charter" in ALIAS No. 10 (charter drawn up with Dr. Stanhope's help)
"Middlesex Hospital Forum" in ALIAS No. 10
"Research Plans" in ALIAS No. 12
"AIS Studies Update" in ALIAS No. 13
"Clinical Psychology Studies" in ALIAS No. 14
"Clinic of the Future?" in ALIAS No. 17
Mr. Adam Balen is setting up a multidisciplinary service in the north of England. Julie Alderson has produced a helpful patient leaflet called The Young Women's Gynaecology Service - Your Appointment with a Clinical Psychologist.
For a link to the web page for the Leeds Teaching Hospitals see Links to Other Sites.
"Doctors Write to Us" in ALIAS No. 3
"New Clinic" in ALIAS No. 7
"8th UK Meeting" in ALIAS No. 13
In Scotland, there is an informal clinical network, the Scottish Genital Anomaly Network (SGAN) which provides specialised multidisciplinary clinics for children with complex genital anomalies. The clinics run twice a year in Aberdeen, Edinburgh and Glasgow. It is hoped that in the future SGAN will receive central funding to formalise clinical services and become a recognised Managed Clinical Network.
The clinical team includes surgeons (general paediatric, plastic, urology), clinical geneticists, clinical biochemists, paediatric nurses, gynaecologists (surgical and reproductive endocrine) paediatric endocrinologist, clinical psychologists (paediatric and adult).
Associated with SGAN, is the Scottish Audit of Genital Anomalies (SAGA). The audit aims to examine the current treatments and interventions for children with complex genital anomalies around Scotland. It is hoped that this data will lead to a clearer understanding of the surgical, medical, functional and psychological long-term outcomes, which can be used to improve services for both children and their carers. The audit is funded for 3 years by NHS Quality Improvement Scotland.
The lead clinicians for SGAN are:
Further details of the clinical network or the audit project can be obtained from Anne Robson, Project Manager, Berg Research Office, 2nd Floor, Queen Mother's Hospital, Greater Glasgow Health Board, Yorkhill Division, Dalnair Street, Glasgow, G3 8SJ. Tel: 0141-201 0825 Fax: 0141-201-0441.
For a link to the web page for the Scottish Genital Anomaly Network (SGAN) see Links to Other Sites.
The following clinicians have been recommended to us by group members in N. Ireland and Eire:
The Child Growth Foundation (2 Mayfield Ave., London W4 1PW. Tel: (0)208 995 0257 or (0)208 994 7625. Fax: (0)208 995 9075) recommends that all children with an endocrine-related problem like AIS should be seen by a specialist paediatric endocrinologist rather than a regular paediatrician. The CGF can supply a list of the (approximately 30) UK Regional Paediatric Endocrinology Clinics.
Our sister group in Holland, AISNederland (see How to Contact Us) has formed a close working relationship with several Dutch clinicians:
Our sister group in Germany, XY Frauen (see How to Contact Us) has formed a close working relationship with several German clinicians:
For a link to the web pages for German hospital facilities for intersex patients see Links to Other Sites.
The UK group has been in correspondence with the following Italian clinician who seems to have a caring approach and wants to help improve services (including more truth disclosure and emotional support):
A very nice doctor from India spent some time during 2004 working in London on a research study with the intersex specialists at University College London Hospital (UCLH), and said that she'd be very keen to help with clinical care and support of Indian patients on her return to India. She is:
A CAIS woman in India recommended (2006):
We can recommend the following paediatric endocrinologists in the USA:
Dr. Bruce Wilson is active in trying to change the way intersex conditions are dealt with, has contributed a chapter to Alice Dreger's book Intersex in the Age of Ethics (see Books and Articles), and has been very helpful to one of his former patients (a member of our group) who contacted him aged 27 (as reported in ALIAS No 16). He attended the Aug 2000 meeting of our US group in Boston as a guest speaker.
A link to Dr Wilson's useful online monograph, covering many aspects of AIS, can be found in the references at the foot of our What is AIS? page.
"Tammy's Tale" in ALIAS No. 16
"5th US Group Meeting" in ALIAS No. 18
Dr. Paul Thornton, a paediatric endocrinologist wrote to us in July 1997 from Ireland and subsequently subscribed to the UK group. He has been extremely supportive and enthusiastic towards our group ever since and he emailed us in Jan 2000 to say he had moved to the US but still wanted to receive ALIAS.
"Sunlight and Fresh Air" in ALIAS No. 10
In terms of clinicians who deal with adults, we recommend the following:
The following clinician seems to have published a number of medical papers on intersex conditions. We published an exchange in our newsletter, ALIAS, between a N. American group member and Dr. Mendonca. The group member was congratulating her on a 1997 paper describing extension of the vagina in XY females by pressure dilation.
"We Write to Professionals" in ALIAS No. 13
Dr. Garry Warne has been interested in AIS and similar conditions for many years and has been immensely helpful and encouraging to the support group (as have the UK clinicians mentioned above). He and his colleagues in various disciplines have operated an 'AIS Study Group' for several years. He is the author of a well-known parent/patient booklet on CAH and we have helped him to produce a similar booklet on CAIS. See History of the Group.
For a link to the web page for the Royal Children's Hospital (endocrinology) see Links to Other Sites.
"Australian AIS Specialist" in ALIAS No. 3
"New Directions", "Antipodean Endocrine Forum" and "Meeting with Dr. Warne" in ALIAS No. 10
"Dr. Garry Warne" and "Advances and Challenges" in ALIAS No. 11
"Australian Consortium" in ALIAS No. 18