AS SHG ein Erfolgsmodell englisch without cartoonx

www.asherman.de –
a success accomplished together
International Asherman´s Association (IAA)
Germany
Corinna M. Dartenne M.A., Moderator of IAA Germany
VII. Symposium des Gynaekologicum Hamburg, Germany
Saturday, 20th February 2010
„Was geht, wenn nichts mehr geht?“
© CM Dartenne
Asherman´s Syndrome a rare syndrome
(?)
In 1846 Récamier publishes about a procedure to remove granulatios from the cervical canal.
He names the instrument „Curette“ and the whole procedure „Curettage“.
Four years later, he extendes the instrument´s use to the removal of granulations also in the uterine cavity
and for the removal of remaining products of conception (see Prochownik 1881, p. 2)
In 1894 the German doctor Heinrich Fritsch reports a case of complet obliteration of the uterine cavity
after a curettage and warns his colleagues not to scrap too hard during a postpartum curettage.
In 1948 J.G. Asherman publishes his first article on „traumatic intra-uterine adhesions“
In 1999 Mrs Spyrou founds the international online Asherman´s Syndrome support group, as
her gynecologist gave her no more hope and she could not find any information on this
syndrome.
In 2005 a patient gave following reason for her joining this support group:
„I haven’t been officially diagnosed with Asherman’s Syndrome, but am trying to get as much
information as possible as my doctor has told me that it is so rare I couldn’t have it.“
(Klemm 2006, p. 82)
© CM Dartenne
Image: Andy Newson / FreeDigitalPhotos.net
a rare syndrome–
a different patient-doctor-relationship
- doctor´s and patient´s ignorance
- no or delayed proper diagnosis
- seldomly an adequate therapy
- a troubled relationship between
patient and gynecologist(s)
patient and doctor in a
Shared Decision Making
dialogue
(situational, depending on the patient´s wish to
participate)
„… No doctor, no matter how dedicated, can possibly keep up on every promising new development …
As a patient, you only have to research one kind of disease and one situation – yours …
All of this means, that by researching your disease yourself, you might find a treatment
that your doctor doesn’t know about …“
(Steve Dunn 2000)
© CM Dartenne
a different doctor-patient-relationship –
the importance of virtual support groups
external activities:
SPIEGEL TV 2003
a)
Information of non-members:
•
•
•
•
•
•
publishing different websites
designing and printing brochures
participating in TV documentaries
articles in (online) journals
YOU TUBE videos
attending conferences
b)
cooperation with experts:
•
collecting relevant medical articles
(i.e. PubMed database)
conducting studies with the support group
members
organising conferences with the experts
publishing interviews with the experts
UK Women´s
Health Show 2009
www.ashermans.org
www.DandC.info
•
•
•
Klemm 2006,
Bormann 2010
selected activities of the IAA and IAA Germany
2007 CYPRUS Conference
on Asherman´s Syndrome
2006 Shuttle Konferenz
zur AAGL, San Francisco
© CM Dartenne
a different doctor-patient-relationship –
the importance of virtual support groups
Klemm 2006: „Die Bedeutung virtueller Selbsthilfegruppen für Patienten, die von seltenen Erkrankungen betroffen
sind („rare diseases“). Untersuchung am Beispiel einer virtuellen Selbsthilfegruppe zum Asherman Syndrom (AS)“
internal activities
a)
emotional coping*:
•
•
•
social support: 92,7 %
(listening to each other, mutual understanding, comfort,
encouraging)
communication without national, time or social strata
boundaries; few inhibitions (language barrier only)
flexible and lasting interaction due to message archives
face-to-face meetings
b)
matter-of-fact coping*:
•
•
•
•
understandable information 96,9 %
answers to easy medical questions
exchange of experiences 97,4 %
communication focused on one subject
(canal reduction)
appointing specialists
90,5 %
84,1 %
and approriate therapies
•
•
* members, who join the group later, profit from the group´s
cumulative expertise
© CM Dartenne
the importance of virtual support groups www.ashermans.org
results from the patients´ perspective (Klemm 2006):
shorter period until proper diagnosis: 89,2 %
shorter period until adequate therapy: 83,8 %
The membership in a virtual support group can therefore …
↗ … shorten the diagnostic process,
↗… support the decision towards the best possible therapy,
↗… shorten the time until adequate therapy takes place and thus …
↗… support and accelerate the patient´s cure of the rare syndrome (Klemm 2006, p. 11).
Today, the importance of medical support groups is acknowledged by all relevant social institutions –
after quite a bit of skeptisism at the beginning. Support groups have become a substantial part of the
modern health system (Braun, Kettler, Becker 1997).
For a fast cure of a rare sydrome, support groups are absolutely
essential! (Dartenne 20th Feb. 2010)
© CM Dartenne
International Group (IAA = International Asherman´s Association)
founded 1999, 1077 members
departements
national groups
ProfASHelp · Professional Help for Asherman´s Syndrome
founded 2001, 114 members with 7 doctors
ProfASstudy · Asherman´s Syndrome Study and Research
founded 2003, 13 members with 9 doctors
ASProfMarketing · Asherman´s Syndrome Marketing
founded 2004, 26 members,
ashermansuk · Asherman´s Syndrome (UK)
founded 2003, 106 members
AS Germany (Deutschland)
founded 2005, 116 members
apoyoasherman · Síndrome de Asherman (Spanien)
founded 2005, 163 members
groupeasherman · groupe asherman (Frankreich)
founded 2006, 33 members
AsherAdopt · Ashermans & Adoption
founded 2005, 26 members,
Supporto_Asherman · Sindrome di Asherman (Italien)
founded 2007, 16 members
updated Januar 2010
SurroAsher · Surrogacy / Ashermans Syndrome
founded 2002, 75 members
© CM Dartenne
www.asherman.de –
a success accomplished together
International Asherman´s Association (IAA)
Germany
Amenorrhoe
possible
diagnosis
hysteroscopy
hormonal treatment/
ultrasound
controlhysteroscopy
hormonal treatment/
ultrasound
pregnancy
delivery
gynecologist
- 275 AS patients during a period of five years (2003-2008) in the Tagesklinik Altonaer Strasse, Hamburg, Germany
- at the moment individual online guidance of 165 AS patients
- personal face-to-face guidance of 41 AS patients (30 from abroad) in the years 2001 – 2009
- 28 birth announcements of these 41 patients (baby-take-home-rate of 68%)
© CM Dartenne
www.asherman.de –
a success accomplished together
Thank you!
International Asherman´s Association (IAA)
Germany
Corinna M. Dartenne M.A., Moderator IAA Germany
VII. Symposium des Gynaekologicum Hamburg, Germany
Saturday, 20th February 2010
„Was geht, wenn nichts mehr geht?“
© CM Dartenne