heart of europe - portfolio...(San Salvador, 5.März 2002, na-poonal).- Odir Miranda, ist 33 Jahre...

heart of europe - portfolio

workshop: AIDS & Human Rightscoach: Lisa Eckelparticipants: Maria Lena Campei, ITA

Min Fang, AUTMagdalena Graf, ITAVeronika Graf, ITAAlexandra Neagu, ROMAndrei Serban, ROMIngrid Szary, AUTAmbros J. Tazreiter, AUTIris Wieser, AUT

2 AIDS & human rights – portfolio

heart of Europe – youth in dialogue

CONTENTS

topic page

I. THE DILEMMA STORIES: 3

1. Dilemma story to the topic Aids and Human rights 3

2. Dilemma story to the topic Aids and Human rights 4

II. AIDS AND HIV – INTERNET RESEARCH: 5

Diskussion um neues Gesetz zu AIDS 5

The Different Stages of HIV Infection 7

III. NEW DILEMMASTORIES OF THE PUPILS: 9

The right to live 9

The unwanted baby 9

Two children – one life 10

IV. TWINS PROBLEM – INTERNET RESEARCH: 11

TWINS PROBLEM 11

Siameze romance separate in America 12

Conjoined twins should be separated 15

Drei Tage nach der Trennung… 16

Tabea ist gestorben, Lea lebt 17

Siamesische Zwillinge: Tag Zwei der Operation 18

Conjoined twins 20

Health Effechts fo the separation of conjoined twins 21

V. DIARY 27

1. AIDS and human rights 27

2. The twins problem: 29



I. The dilemma stories:

1. Dilemma story to the topic Aids and Human rights(written by Mag. Kurt Eckel)

The 19-year-old girl Kathrin confines in her classmate Sabrina, of same age, that she is HIVpositive. Everything happened when she was 16. Her then-boyfriend infected her when theyhad sex for the first time.They didn’t have safer sex and the topic aids didn’t exist for the loving couple. Theboyfriend of Kathrin’s was considerably older than her and she never found out why he hadthis virus.

Kathrin and Sabrina already got better friends in the last class of their school and theyplanned to go together to the capital city to study there. They wanted to get a flat togetherand do their studies together.

Sabrina is shocked because of her girlfriend`s infection of her girlfriend. Now she thinksabout the new situation. Should she dissociate from Karthrin, resign from their shared plansof a study, and find another student for their flat.

The same time Sabrina remembers what she learned years ago from the Youth Red CrossAIDS-Peers in school. She also remembered what she heard about the topic discriminationand social exclusion of HIV positive people.

As Sabrina is going to study law, she was always interested in human rights. So she realisesthat HIV/Aids and human rights are linked in many ways.

The young lady has a big dilemma:• Should she dissociate from her friend and resign the friendship?• Should she stand by her friend any longer?• Should she put fear and her personal feelings against the rationality? Should she

ignore the human rights as others do?• Why?



2. Dilemma story to the topic Aids and Human rights(written by Mag. Kurt Eckel)

Michaela N. is 35 year old and HIV positive. She was infected by her then-boyfriend whenshe had sex for the first time.Her boyfriend was haemophiliac and was fixed at a therapy with blood products with the HI-virus. Over the intervening years he died because of AIDS.

At the moment Michaela is applying for a job in a big company. Her chances to get this jobare good, but she didn’t say anything about her disease.

At her last job interview there was an incident and Michaela collapsed during theconversation with the personnel manager Franz P.. After this she told him that she is HIVpositive.

On the one hand she was lucky, because the personnel manager Franz P. is a very socialperson and in his free time he lobbies the adherence of the human rights. On the otherhand he is very correct with his employer and does not want to take any risks because of anemployment of Michaela N, a HIV positive person.

Franz P. has a big dilemma:• Because of his enquiries he knows how often the fundamental rights of man who live

with HIV/AIDS or people who are supposed to be HIV positive get hurt. He alsoknows that there is a right of non discrimination, individual prevention, equality oflaw, protection of private life, freedom of movement, right to work and others.

• But is he allowed to employ Michaela N. in his company? Isn’t it a too big risk to giveher this job?

• What should he do, and why?



II. AIDS and HIV – internet research:

http://www.astm.lu/article.php3?id_article=387Date: 15.06.2006

EL SALVADOR

Diskussion um neues Gesetz zu AIDS

Keine Arbeit ohne TestVon Edgardo Ayala.

(San Salvador, 5.März 2002, na-poonal).- Odir Miranda, ist 33 Jahre alt und hat AIDS. DieKrankheit hätte ihn fast das Leben gekostet. Umso froher war der Aktivist, dass dersalvadorianische Kongress endlich ein Gesetz zur Prävention und Kontrolle der Krankheitverabschiedet hat. In seiner Funktion als Präsident der Organisation Atlacatl, einZusammenschluss von HIV-Positiven und AIDS-Kranken, hatte Miranda sich für ein solchesGesetz eingesetzt.

Die Freude verging ihm jedoch, als er feststellen musste, dass das neue "Gesetz zurVorbeugung und Kontrolle der Infektion durch HIV" mit Widersprüchen gespickt war undeindeutig diskriminierende Züge gegenüber den vom Virus Betroffenen zeigte. Seit seinerVerabschiedung am 24. Oktober 2001 haben Atlacatl sowie Frauen- undSchwulenorganisationen das Gesetz in Frage gestellt.

Vor allem der Artikel 16D ist umstritten. Dieser gestattet den Unternehmen, von ihrenAngestellten einen AIDS-Test zu verlangen. Als gesetzliches Schlupfloch dient dafür dasArbeitsgesetz, welches die ArbeitnehmerInnen dazu verpflichtet, sich einer gesundheitlichenUntersuchung zu unterziehen falls ihr Arbeitgeber dies verlangt. Da hilft es auch nicht, dassandere Absätze des Artikels 16 die Vertraulichkeit im Fall einer HIV-Infektion fordern undeine Entlassung auf Grund der Krankheit verbieten.

Die Organisationen weisen darauf hin, dass es fatale Folgen hat, wenn dieseUntersuchungen in Zukunft AIDS-Tests einschließen. Im Falle eines positivenTestergebnisses, würden die Betroffenen mit Sicherheit sofort entlassen werden. Dieswiderspricht nicht nur internationalen Abmachungen sondern auch der salvadorianischenVerfassung, die ihren BürgerInnen das Recht auf Arbeit, auf Menschenwürde und aufVertraulichkeit zusichert. Natürlich, so Miranda, würden die Unternehmen nicht die Infektionselbst als Motiv für die Entlassung angeben, sondern irgendeinen einen anderen Grund anden Haaren herbei ziehen ; rausgeschmissen würden die Leute dann aber mit größterWahrscheinlichkeit trotzdem.

Nach Daten einer Studie über AIDS in El Salvador, die 1999 von der UNO- OrganisationONUSIDA erarbeitet wurde, liegt die Zahl der HIV-Infizierten in dem mittelamerikanischenLand bei über 20,000. Davon sind 74.9% Männer und 25.1% Frauen.

Miranda versichert, dass die Forderung nach HIV-Tests erst in letzter Minute dem Gesetzzugefügt wurde. Verantwortlich macht er dafür die Abgeordneten der RegierungsparteiARENA, die seiner Meinung nach von den Unternehmern des Landes unter Druck gesetztworden waren. Damit hätten sie sich für einige Begünstigungen seitens der Unternehmenrevanchiert. Die Unternehmer wiederum wollen ihre Firmen von dem "Geschmeiss""reinigen". Die feindselige Einstellung gegen HIV-Positive zeigt sich auch in den



Kommentaren der Medien. Diese fordern immer häufiger, dass der Staat sein Geld nicht fürLeute aus dem Fenster werfen soll, die sich durch ihren "verdorbenen Lebenswandel" selbstin diese Situation gebracht haben.Norman Quijano ist Abgeordneter der ARENA und hat an dem Gesetz mitgearbeitet. Erverteidigt den Absatz D mit dem Argument, dass man nicht sechs Millionen Salvadorenosgefährden dürfe, um 15 000 HIV-Infizierte zu schützen. Quijano, der selbst Arzt ist, glaubt,dass die Tests bei bestimmten Berufsgruppen, wie z.B. Chirurgen, obligatorisch sein sollten,während ihre Anwendung in anderen Sparten, wie z.B. bei Bankangestellten sinnlos sei.Über Sinn und Zweck der Untersuchungen sollen jedoch die Unternehmer selbst entscheidendürfen. So öffnet das Gesetz den Unternehmern Tür und Tor, von allen ihren Angestellteneinen AIDS-Test zu verlangen.

Die Menschenrechtsbeauftragte Beatrice de Carrillo denkt, dass die meisten Abgeordnetendem Thema AIDS völlig gleichgültig gegenüber stehen und dass der Grund für die Mängeldes neuen Gesetzes in eben dieser Gleichgültigkeit zu suchen sei. Dabei stellt de Carillonicht nur den umstrittenen Artikel 16D in Frage, sondern vor allen Dingen die Art undWeise, in der das Gesetz formuliert und verabschiedet wurde. Sie kritisiert unter anderem,dass es nie eine öffentliche Debatte um das Gesetz gegeben habe und somit denverschiedenen Bevölkerungsgruppen keine Gelegenheit gegeben worden sei, Vorschläge zuerarbeiten und Forderungen zu stellen

Odir Miranda setzt nun seine Hoffnungen in den obersten Gerichtshof, der sich mit einerVerfassungsklage bezüglich des umstrittenen Gesetzes beschäftigt. Die am 1. Dezembereingereichte Klage bezichtigt den Absatz D der Verfassungswidrigkeit, da er gegen dasRecht auf Arbeit, auf die Menschenwürde, den Schutz der Persönlichkeit und desöffentlichen Ansehens verstößt.



http://www.avert.org/hivstages.htmDate: 15.06.2006

The Different Stages of HIV Infection

HIV infects cells in the immune system and the central nervous system. The main type ofcell that HIV infects is the T helper lymphocyte. These cells play a crucial role in the immunesystem, by coordinating the actions of other immune system cells. A large reduction in thenumber of T helper cells seriously weakens the immune system.HIV infects the T helper cell because it has the protein CD4 on its surface, which HIV usesto attach itself to the cell before gaining entry. This is why the T helper cell is sometimesreferred to as a CD4+ lymphocyte. Once it has found its way into a cell, HIV produces newcopies of itself, which can then go on to infect other cells.Over time, HIV infection leads to a severe reduction in the number of T helper cellsavailable to help fight disease. The process usually takes several years.HIV infection can generally be broken down into four distinct stages: primary infection,clinically asymptomatic stage, symptomatic HIV infection, and progression from HIV toAIDS.

STAGE 1 : Primary HIV InfectionThis stage of infection lasts for a few weeks and is often accompanied by a short flu-likeillness. In up to about 20% of people the symptoms are serious enough to consult a doctor,but the diagnosis of HIV infection is frequently missed.During this stage there is a large amount of HIV in the peripheral blood and the immunesystem begins to respond to the virus by producing HIV antibodies and cytotoxiclymphocytes. This process is known as seroconversion. If an HIV antibody test is donebefore seroconversion is complete then it may not be positive.

STAGE 2 : Clinically Asymptomatic StageThis stage lasts for an average of ten years and, as its name suggests, is free from majorsymptoms, although there may be swollen glands. The level of HIV in the peripheral blooddrops to very low levels but people remain infectious and HIV antibodies are detectable inthe blood, so antibody tests will show a positive result.Research has shown that HIV is not dormant during this stage, but is very active in thelymph nodes. A test is available to measure the small amount of HIV that escapes thelymph nodes. This test which measures HIV RNA (HIV genetic material) is referred to as theviral load test, and it has an important role in the treatment of HIV infection.

STAGE 3 : Symptomatic HIV InfectionOver time the immune system becomes severely damaged by HIV. This is thought tohappen for three main reasons:

• The lymph nodes and tissues become damaged or 'burnt out' because of the years ofactivity;

• HIV mutates and becomes more pathogenic, in other words stronger and morevaried, leading to more T helper cell destruction;

• The body fails to keep up with replacing the T helper cells that are lost.As the immune system fails, so symptoms develop. Initially many of the symptoms aremild, but as the immune system deteriorates the symptoms worsen.

Where do opportunistic infections and cancers occur?Symptomatic HIV infection is mainly caused by the emergence of opportunistic infectionsand cancers that the immune system would normally prevent. These can occur in almost allthe body systems, but common examples are featured in the table below.As the table below indicates, symptomatic HIV infection is often characterised by multi-system disease. Treatment for the specific infection or cancer is often carried out, but the



underlying cause is the action of HIV as it erodes the immune system. Unless HIV itself canbe slowed down the symptoms of immune suppression will continue to worsen.

System Examples of Infection/Cancer

Respiratory system Pneumocystis Carinii Pneumonia (PCP)Tuberculosis (TB)Kaposi's Sarcoma (KS)

Gastro-intestinal system CryptosporidiosisCandidaCytomegolavirus (CMV)IsosporiasisKaposi's Sarcoma

Central/peripheral Nervous system HIVCytomegolavirusToxoplasmosisCryptococcosisNon Hodgkin's lymphomaVaricella ZosterHerpes simplex

Skin Herpes simplexKaposi's sarcomaVaricella Zoster

STAGE 4 : Progression from HIV to AIDSAs the immune system becomes more and more damaged the illnesses that occur becomemore and more severe leading eventually to an AIDS diagnosis.At present in the UK an AIDS diagnosis is confirmed if a person with HIV develops one ormore of a specific number of severe opportunistic infections or cancers. In the US, someonemay also be diagnosed with AIDS if they have a very low count of T helper cells in theirblood. It is possible for someone to be very ill with HIV but not have an AIDS diagnosis.



III. New Dilemmastories of the pupils:

The right to live(written by Alexandra, Andrei, Ambros)

Eve is married to Tom and they are both HIV positive. After a few years they decide to havea baby, even if it was way later that she found out about her husband´s disease. And faithhas it that at the moment of speking she is pregnant.

Despite the happyness brought by the news of having a baby, they need to decide whetherto keep the baby or not and no option is missing the negative aspects. Even though there isa small chance for the baby to be infected with HIV ( 25% to be exact ) they don´t know ifthey should cosider abortion or not.

1. Does anyone have the right to end an innocent life before it even began, of a childwho has not even seen the sunlight?

2. Would it be right for a child to come to this world already infected, to be marginalizedby society and live in darkness, like an outsider almost all his life, despite the humanrights, that can be wrong in this case?

3. Should someone be stopped from being a parent just because of a viruse like HIV?

The unwanted baby(written by Ingrid, Iris, Min)

Rosa L. 19 years old, takes heroin, and after one year of being addicted she realizes, thatshe is HIV positiv even though she does not know, when and why she got infected.Although her body is very weak, Rosa has got a boyfriend, who unfortunately is drugaddicted too. They have a pretty rough love affair, and after a time she realizes that she´spregnant. They live in very bad conditions and also don´t know how to survive the nextday.An other problem would be, that the baby will be drug addicted after giving birth and the HIvirus could infect the baby too. Her boyfriend left her, after the sad message of herpregnancy, so she is left on her own.Although she is very depressive and living in unluckily circumctances she wants to keep thebaby.For her baby it would be better if she aborted it, because of the risc that her baby gets allher infections too.

• What shall she do, if she wants to keep her baby?• Is is morally and ethically right to save the unborn from the consequences?• Who can help her, to live an healthier life?• If she keeps the baby, should she give it free for adoption, to avoid a bad influence

and to offer her baby a better life?



Two children – one life(written by Magdalena, Maria, Veronika)

Mr and Mrs Smith are happy because they are expecting two babies. But after six monthsof pregnancy the doctor tells them that the children are siamese twins and they are growntogether at their heads. Also their brains are grown together. If the doctor does not dividethem they will be handicapped for life, but if he does then one of the twins will die for surebecause of the fact that their brains are grown together in a very critical way.

The last months of pregnancy are very difficult for Mrs Smith because she is placed before adecision: Should she have her babies split or not?

• Can she as a mother or any human decide whether another should live or die?• Would it be right to burdon a child with the fate of never being normal?• Doesn’t everyove have a right to live?



IV. Twins problem – internet research:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9462196&query_hl=3&itool=pubmed_docsumDate: 16.6.2006

TWINS PROBLEM

A policy of expectant management until 32 weeks of gestation in 29 dichorionicpregnancies discordant for growth retardation resulted in an overall mortality of 24% (95%CI 13.9-37.2%) and a handicap of 2.2% (95% CI 0-12.0%). None of the normally grown co-twins died or was handicapped as a result of iatrogenic prematurity.The Harris Birthright Research Centre is a referral unit for fetal diagnosis and treatment.

Details on patients' demographic characteristics, medical and obstetric history, andultrasound findings are entered into a computer database at the time of the ultrasoundexamination. Twin pregnancies were classified as dichorionic if the placentas were notadjacent to each other or the lambda sign was present.1 2 The results of any investigationsand pregnancy outcome were entered into the database as they became available.

Written by Andrei:It is better not to divide them taking in account the fact that one is condemned to death

and the other one can live and experience a proper life. What is happiness? If they both livetogether and suffer this handicap all their life, they know it´s the only way they can get toknow the meaning of existence on this world. If they haven´t experienced anything else,then they adapt and accept their condition in life. It´s better to live in a different way, apartfrom society then not to know what life feels like, when you have all the power you need soyou can shout that you lived in this world.No human being has the right or the power to decide the faith of another. It´s worse then

genocide.



http://www.9am.ro/revistapresei/Social/6477/Siameze-romance-separate-in-AmericaDate: 16.06.2006

Siameze romance separate in America

Sursa: Libertatea, 16 Martie 2005

In ianuarie 2004 s-au nascut primele siameze romane lipite in zona capului: Anastasia siTatiana. Desi impart tesuturi si vase de sange, gemenele nu au functii ale creieruluicomune. Desi au stiut inca din timpul sarcinii ca vor avea siameze, parintii fetitelor nu s-augandit sa renunte la ele. "Daca esti credincios stii ca orice copil conceput trebuie sa senasca. Unii inteleg gresit, dar copilul nu este un drept al parintelui, ci un dar", explica tatalfetelor, Alin Dogaru. Cele doua fetite sunt acum la Dallas, asteptand operatia de separare.

Tatiana si Anastasia au venit pe lume in 13 ianuarie 2004. Nimeni nu poate sa spuna caredintre ele a fost prima, intrucat cele doua fetite sunt... un tot, fiind lipite in zona capului.Desi stiau acest lucru de cand gemenele aveau 19 saptamani, parintii lor nu s-au gandit nicio clipa la sa renunte la sarcina. Din motive religioase, din motive umane, cert e ca asa le-aspus sufletul. Mai intai au sperat ca aparatele medicale mint. Cand nasterea a confirmat caaveau dreptate au inceput sa creada tot mai tare ca fetele vor putea fi separate printr-ointerventie chirurgicala. Acum sunt la un pas de implinirea acestui vis, doar ca mai aunevoie de un... miracol: operatia costa minimum doua milioane de dolari, bani pe care ceidoi n-ar putea sa-i agoniseasca nici in zece vieti. in primavara anului 2003, Alin si Claudiaau trait o mare bucurie afland ca urmeaza sa li se nasca un copil. "Sotia mea pierduse douasarcini dupa ce a nascut-o pe Maria, asa ca am fost foarte fericiti", spune parintele. Laprima ecografie, pe care Claudia l-a facut-o in saptamana a noua, cei doi au aflat caasteapta, de fapt, gemeni.

"Medicul ne-a spus chiar de-atunci ca sunt foarte apropiati. Dar n-a putut sa ne spuna dacasunt lipiti", rememoreaza, Alin Dogaru. A fost insa suficient ca sotii Dogaru sa inceapa sa-sifaca ganduri. "Exact in acea perioada cumparasem o carte despre viata intrauterina, pentruuna din lucrarile mele. Iar Claudia, rasfoind cartea, a deschis exact la capitolul despregemeni monozigoti, unde se vorbea despre diviziunea neterminata... A avut o strangere deinima". Au preferat sa nu se gandeasca deloc la aceasta varianta. in august au venit sa-sipetreaca vacanta in Romania, iar in septembrie, cand s-au intors in Italia, s-au dus din noula ecograf. "Era 19 septembrie, iar sarcina era in saptamana a 19-a. Era cert ca fetitele suntlipite in zona craniana, iar ginecologul ne-a facut o programare pe 2 octombrie, la unspecialist din Bologna", spune preotul. Oricum, tot ceea ce stiau despre fetitele lor eraudatele furnizate de aparate. Iar acestea, spune Alin, se puteau insela. in plus, pe 13octombrie au aflat, o data cu intreaga planeta, ca doi siamezi egipteni uniti in zona capuluiau fost separati cu succes in SUA. Iar speranta a renascut in sufletele lor. in decembrie,Claudia a fost programata la o radiografie cu rezonanta magnetica.

"Medicii au observat ca gemenele au vase de sange comune, ceea ce insemna ca nu puteaufi operate imediat dupa nastere", povesteste Alin. Claudia a fost internata in saptamana a33-a de sarcina. "Am dus-o la spital in 9 ianuarie, iar fetitele s-au nascut, prin cezariana, in13 ianuarie, la ora 19.40. Cand a iesit sotia din operatie, la 20.30, mi-a spus ca medicii nui-au aratat gemenele. si pe mine abia m-au lasat sa le vad, pe la ora 23, dupa o gramadade aprobari", spune tatal. Avand in vedere ca a facut o infectie la nastere, care nu i-a datvoie sa coboare din pat, Claudia si-a vazut fetele abia pe 18 ianuarie, cand sotul sau aorganizat, la spital, ceremonia de botez, "cu toata randuiala".

Nas a fost un coleg si prieten de-al preotului Dogaru, care in acel moment se afla la studii inRoma. Uneia din fetite i-au pus numele Anastasia (invierea - in greaca), iar celeilalte,Tatiana (Regina Zanelor). Dupa doua saptamani de terapie intensiva, gemenele au fostexternate: respirau si mancau singure, ca orice copil normal. "Aveam o strangere de inima,



sa nu se intoarca si sa-si faca rau una alteia; sau sa nu cada din patut... Cand erau foartemici le intoarceam o data la trei ore, sa nu cumva sa se sufoce. Am avut o mica problema sicu hainele, pentru ca nu erau bune decat cele mai largi la gat, care se pot imbraca pe lapicioare. in plus, nu putem sa le facem baie ca unor copii normali, asa ca ne-am invatat sale spalam doar cu buretele", explica tatal. in timp ce sotii Dogaru asteptau un raspuns dinpartea medicilor de la Roma, sora lui Alin, Patricia, stabilita in Statele Unite, a gasit adresade e-mail a medicului Kenneth E. Salyer, care ii operase cu succes in 2003 pe cei doi simeziegipteni, si i-a trimis un mesaj la care a primit raspuns chiar a doua zi.

"Medicul era de acord sa analizeze cazul lor si ne-a transmis sa-i trimitem radiografiilefetitelor", le-a mai povestit Alin Dogaru reporterilor de la Clujeanul. I-au scris in aprilie sidupa o luna au primit un raspuns in care doctorul ii spunea ca dupa ce s-a consultat cu totimembrii echipei sale, a ajuns la concluzia ca separarea este posibila, dar ca trebuie sa leevalueze personal pe gemene. Pe 19 octombrie 2004, Claudia, Tatiana si Anastasia urcauintr-un avion cu destinatia Dallas. in SUA fetitele au fost supuse unor minutioase analize. infinal, medicii au "votat" pentru separare, mai ales ca in lipsa interventiei sansele desupravietuire ale gemenelor ar fi nule.

"Italienii au promis ca ne ajuta, fiind un caz special. Dar cu romanii nu am reusit nimic", maispune Alin. A incercat sa le aduca in Romania, dar compania TAROM nu vrut sasponsorizeze nici macar un loc in avion, sa le poata transporta pe fetite in conditii decente."American Airlines a putut face acest lucru pentru calatoria in SUA", marturiseste parintele.Nu se simte amaraciune in glasul sau. Pentru ca stie ca fiecare om trebuie sa-si poartecrucea. Dar s-ar bucura sa gaseasca mai multa solidaritate si ingaduinta. Nu pentru el, cipentru cele doua micute care nu stiu ca ar putea sa se priveasca in ochi, sau sa se sarute peobraji... Cei care doresc sa-i ajute pe sotii Dogaru o pot face donand bani in conturile cunumerele 25464841300 (in lei) si 25465301300 (in valuta), deschise la Banca Romana deDezvoltare.

A treia operatie reusita in lume a fost a siamezelor Boaru

* Prima documentare despre siamezi a aparut in anul 1100, in Anglia. Numele, de"siamezi", li s-a dat insa sapte secole mai tarziu, de la Siam (vechea denumire a Thailandeide azi), locul in care s-au nascut, cu pantecele unite, Eng si Chang (foto jos). Cand aveau17 ani, mama lor, o vaduva saraca lipita, i-a vandut unui negustor scotian si unui capitan devas englez. Asa au inceput gemenii sa cutreiere lumea, fiind prezentati in spectacole de circ.Dupa patru ani, si-au castigat libertatea si au inceput sa faca turnee pe cont propriu. Austrans o avere considerabila si si-au luat numele Bunker. in drumurile lor prin toate colturilelumii, gemenii au cautat zadarnic un medic care sa-i separe. in 17 ianuarie 1874, Chang,care de trei ani paralizase partial, a murit in somn. Disperat, Eng a chemat un doctor caresa incerce sa-l desparta de fratele mort. Din cauza groazei insa, a murit si el inainte desosirea posibilului salvator.* in Romania, cazul in jurul caruia s-a facut cea mai mare valva a fost cel al Linei siGherghinei Boaru, care s-au nascut cu aproape o cincime a corpului comuna. in vara lui1982 vestea venirii pe lume a unor siameze intr-o locuinta modesta din Botosani a facutocolul intregii tari.

La maternitate oamenii ajunsesera sa stea la coada spre a le putea vedea - cu 50 de lei datimedicului - pe cele doua fetite. Dupa sase luni in care au trait lipite una de alta, Lina siGherghina (in medalion) au fost separate printr-o interventie chirurgicala la o clinica dinElvetia. Era a treia reusita de acest fel la nivel mondial. La 24 de ani, cele doua duc un trainormal, fac cursuri de croitorie si canta in zilele de duminica in corul bisericii locale.* in urma cu 7 ani, o femeie din satul aradean Peregu Mic a nascut doua gemene cupiepturile lipite, Melinda si Izabela. De la Arad, siamezele au fost mutate la Timisoara. Cutoate ca medicii de acolo le-au spus ca mai trebuie asteptat cam o jumatate de an, Suzanasi Emerike Szabo si-au dus dupa trei luni fetitele la Szeged, in Ungaria, unde acestea au fostoperate si despartite imediat.



http://en.wikipedia.org/wiki/Parasitical_twinDate: 16.6.2006

A parasitic twin is the result of a situation related to the process that results in teratomas,vanishing twin, and conjoined twins – two unique embryos begin developing in utero, butsomething goes wrong. Parasitic twins are also known as asymmetrical conjoined twinsor unequal conjoined twins. Parasitic twins are a variation on conjoined twins—exceptone of the twins stopped developing during gestation and is now vestigial to a healthy,otherwise mostly fully-formed individual twin. They are defined as parasitic, rather thanconjoined, by being incompletely formed or wholly dependent on the body functions of thecomplete fetus.



http://bmj.bmjjournals.com/cgi/content/full/321/7264/788/fDate: 16.6.2006

BMJ 2000;321:788 ( 30 September ) News extra

Conjoined twins should be separated

Clare Dyer legal correspondent, BMJ

The conjoined twins whose plight has transfixed Britain for weeks should be separated tosave the life of the stronger twin, three appeal court judges ruled last week.

The ruling means that doctors may go ahead with the operation to stop Mary, the weakertwin, draining the life from Jodie, the stronger. Mary has no functioning heart or lungs andrelies on her sister for oxygenated blood. Without an operation, both twins will die.

Three appeal court judges ruled unanimously that the operation should take place in Mary’sbest interests. But the parents of the 6 week old girls, who want nature to take its course,may take the case further, to the House of Lords. The appeal court gave permission for theparents and the official solicitor, representing Mary, to appeal to the lords.

As the BMJ went to press, it seemed unlikely that the official solicitor would take the casefurther, but the parents’ solicitor, John Kitchingman, said they had not yet decided whetherto appeal.

The parents, Roman Catholics from the Mediterranean island of Gozo, came to St Mary’sHospital, Manchester, for the delivery after a scan showed they were expecting conjoinedtwins.

Doctors wanted to operate to give Jodie a chance of life, but the parents refused consent,saying that God’s will should prevail. The case went to the family division of the High Courtin London, where Mr Justice Johnson ruled in August that the operation should go ahead.

Jodie is thought to be of normal intelligence, and doctors believe there is a good chance thatshe will eventually walk unaided. But when the parents appealed, it seemed that thecriminal law might pose an insuperable obstacle.

English law forbids the killing of an innocent person for the benefit of another. In a lengthyand closely reasoned judgment, the judges decided that the doctrine of necessity wouldprovide the doctors with a defence to a charge of murder. Doctors had conflicting duties toboth babies, and, where this applied, the life of the one who was in any event doomed todie could be sacrificed.

Their judgment, which makes new law, justifies the killing of Mary as a defence of Jodie, tostop her from being drained of life by her sister. Lord Justice Ward used the analogy of a 6year old boy randomly shooting others in a playground. He had no doubt that to kill the boyif necessary to protect the others would be lawful.

To allay fears that the ruling could be used to try to justify a doctor in prematurely endingthe life of a terminally ill patient, Lord Justice Ward spelled out that it covered only thenarrowest of circumstances: where X cannot be saved without killing Y; where Y, bycontinuing to exist would inevitably kill X; and where X is capable of an independent life butY is not, whatever the medical intervention.



http://www.stern.de/wissenschaft/mensch/530056.html?eid=529542Date: 16.06.2006

Drei Tage nach der Trennung…

…von ihrer siamesischen Zwillingsschwester Tabea schwebte die kleine Lea amSonntag noch immer in Lebensgefahr.

Der Zustand von Lea sei unvermindert "kritisch, wenngleich stabil", lautete das Bulletin derÄrzte über den Zustand des Mädchens aus dem nordrhein-westfälischen Lemgo. Lea wird imKinderhospital der Johns Hopkins Universität in Baltimore (US-Bundesstaat Maryland)behandelt.

Heute will sich Prof. Richard Redett mit den Eltern treffen, ein plastischer Chirurg. Dabeiwird es um die kommende Operation gehen, bei der die Abdeckung des Kopfes noch einmalneu angelegt werden soll, weil es bei der Trennung von Lea und Tabea ziemlich schnellzugegangen ist in der Nacht zum Donnerstag vergangener Woche. So muss auch ein kleinesStück künstlicher Abdeckung entfernt und durch eigene Haut ersetzt werden. Mehr wirddabei aber nicht geschehen. Alle hoffen, dass Lea diesen Eingriff durchhalten wird.

In einem Trauergottesdienst hatten am Samstag mehr als 800 Menschen in Lemgo derkleinen Tabea gedacht, die nach der Trennung von ihrer Siamesischen ZwillingsschwesterLea am Donnerstag in Baltimore gestorben war. Ein Angehöriger der mennonitischenGemeinde berichtete, die Menschen seien traurig und bedrückt. Auch die Großeltern derbeiden Mädchen nahmen an der Trauerfeier teil. Tabea soll in ihrer Heimatstadt im engstenFamilienkreis beigesetzt werden. Die Gläubigen beteten bei dem Gottesdienst auch für dasLeben ihrer Schwester.

Lea müsse noch mehrmals operiert werden, damit ihre Schädeldecke endgültig geschlossenund der Kopf normal geformt werden könne. Das sagte der Leiter des Chirurgenteams,Benjamin Carson. Nach ihrer Entlassung aus der Universitätsklinik "in einigen Wochen oderMonaten" könne sie nach Lemgo zurückkehren und werde anschließend von deutschenÄrzten betreut. Der Neurologe Tilman Poster und der Kinderarzt Martin Bruns hatten dieEltern in die USA begleitet, um ihnen die Trennungsprozedur und den anschließendenZustand der Kinder erläutern zu können.

Tabea hatte die insgesamt rund 30-stündige Operation nicht überlebt. Sie starb am frühenDonnerstag, kurz nachdem sie von Lea getrennt und aus dem Operationssaal gefahrenworden war. Als Todesursache gab Carson unregelmäßige Herzschläge und hohenBlutverlust während des Marathoneingriffes an. Die Zwillinge waren an der Schädeldeckezusammengewachsen und teilten sich die größeren Blutgefäße im Hirn.



http://www.stern.de/wissenschaft/mensch/529804.html?eid=529542Date: 16.06.2006

Tabea ist gestorben, Lea lebt

Chronologie der EreignisseDie Trennung der deutschen siamesischen Zwillinge Lea und Tabea am JohnsHopkins Hospital in Baltimore endete dramatisch: Tabea ist tot, Lea dagegen ist inkritischem, aber stabilem Zustand.

Mittwoch, 15.09.2004

Die Trennungsoperation der siamesischen Zwillinge war am Morgen amerikanischer Zeitwiederaufgenommen worden, nachdem sich Tabea von zwei Herzstillständen amvergangenen Samstag so weit erholt hatte, dass sich die Ärzte um Professor BenjaminCarson zum Weitermachen entschließen konnten.

Gegen 06:00 Uhr EST (12:00 Uhr MESZ) hatten die Vorbereitungen der Operationbegonnen, etwa drei Stunden später wurden die Nähte vom Samstag wieder geöffnet. Diezum Schutz der Gehirne provisorisch eingepflanzten Titanplatten wurden zunächst nichtentnommen. Stattdessen begann das Team nach der Entfernung eines weiterengemeinsamen Knochenstückes am Hinterkopf der Zwillinge etwa um 12:30 EST (18:30MESZ) damit, das noch verbundene Gefäßsystem der Kinder weiter zu trennen. Nach knappzwei Stunden war das etwa zur Hälfte und ohne weitere Komplikationen gelungen.

Es war vorgesehen, die nach dem Abbruch der Trennung am vergangenen Samstageingepflanzten Expander unter der zusammengenähten Kopfhaut der Mädchen wieder zuentfernen. Diese Silikonkissen hatten in den vergangenen Tagen dafür gesorgt, dass sichdie über Wochen künstlich gedehnte Haut nicht wieder zusammenziehen konnte. So solltesichergestellt werden, dass nach der Trennung genügend Gewebe für den endgültigenVerschluss der beiden Köpfe zur Verfügung steht.

15:30 Uhr EST (21:30 Uhr MEZ): Die Zwillinge sind mit ihrem OP-Gestell wieder mit demGesicht nach oben gedreht worden. Obwohl das venöse Gefäßgeflecht noch nicht völliggetrennt worden ist, soll nun offenbar damit begonnen werden, die dichtaneinanderliegenden Gehirne der Mädchen Stück für Stück auseinander zu bringen. Jetztsteht ein sehr heikler Teil der OP an: die Trennung des Geflechtes der Hinterkopf-Blutgefäße. Der Abschluss der OP wird nach jetzigem Stand voraussichtlich nicht vorMitternacht EST (06:00 Uhr MEZ am Donnerstag) erfolgen können.

17:30 Uhr EST (23:30 Uhr MESZ): Lea und Tabea geht es immer noch gut. DasChirurgenteam arbeitet sich weiter zwischen den dicht aneinander liegenden Gehirnen derMädchen hindurch. Da mit größter Vorsicht vorgegangen werden muss, um Verletzungendes empfindlichen Gewebes und daraus resultierende neurologische Schädigungen derZwillinge zu vermeiden, verwenden die Ärzte inzwischen auch ein Mikroskop. Sie kommenlangsam voran, haben bislang aber offenbar Erfolg bei dem hochkomplizierten Eingriff.

20:00 Uhr EST (02:00 Uhr MESZ): Die Trennung der beiden Gehirne von Lea und Tabeageht weiter voran. Da einige Bereiche aber wohl engeren Kontakt haben, als zunächstangenommen, könnte sich der Abschluss der Operation am Johns Hopkins Hospitalverzögern. Wie der stern erfuhr, wird jetzt davon ausgegangen, dass die Gehirne nicht vorMitternacht Ortszeit (06:00 Uhr MESZ) getrennt sein werden. Es scheint auch möglich, dassdieser Teil des Eingriffs sogar noch einige Stunden mehr in Anspruch nehmen wird.



http://science.orf.at/science/news/80586Date: 16.06.2006

Siamesische Zwillinge: Tag Zwei der Operation

Sonntag Früh haben Ärzte in Singapur mit einerriskanten Operation begonnen: Sie wollenerwachsene siamesische Zwillinge trennen. DieOperation wird voraussichtlich noch bis DienstagFrüh dauern.

Bisher wurden solche Eingriffe nur an Kindernvorgenommen. Die Patientinnen - 29 Jahre alteSchwestern aus dem Iran - sind am seitlichenHinterkopf miteinander verbunden.

"Operation Hoffnung"Ladan liebt die Farbe blau, Laleh bevorzugt Rot. DieSchwestern sind am seitlichen Hinterkopfmiteinander verbunden. Jahrelang waren die29jährigen Frauen aus dem Iran auf der Suchenach Ärzten, die ihnen ein eigenständiges Lebenermöglichen. "Operation Hoffnung" wird der Eingriffim Raffles-Privatkrankenhaus in Singapur nungenannt.

Einmalige und riskante OperationBisher schlugen vier von fünf solcher Trennungenfehl, sagte der leitende Chirurg Keith Goh vor derOperation. Erwachsene siamesische Zwillinge zutrennen, habe vor ihm noch überhaupt niemandversucht.

"Nicht bloße Kosmetik"Der Eingriff sei nicht "bloße Kosmetik" und nichtausschließlich ein ersehnter Wunsch derSchwestern, sondern er sei auch medizinisch zubegründen, hieß es am Sonntag von der Privatklinikin Singapur. Denn Voruntersuchungen hättengezeigt, dass der Druck in den Köpfen der Zwillingefast beim Doppelten des Normalwertes liege.

Ohne die Operation hätten die Zwillinge lautRaffles-Krankenhaus unter Kopfschmerzen, Migräneoder Sehstörungen leiden können, im schlimmstenFall hätte sich die Hirnleistung verschlechternkönnen. Allerdings hätten die Schwestern auch



ohne die Operation weiterleben können, teilte dasKrankenhaus mit.

"30 Jahre sind genug"Das Risiko der Operation ist groß. Das haben die behandelndenÄrzte nie bestritten. Auch Ladan und Laleh sind sich dessenbewusst, doch sie wollen nicht länger warten und aufmedizinische Fortschritte hoffen, denn - so meinten sie vor derOperation - 30 Jahre seien genug.

Die 29jährige Ladan vor der Operation: "Wir hoffen, dass dieOperation gut geht. Wir sind glücklich und aufgeregt und einbisschen nervös - vor allem ich." Die Schwestern meinten vorder Operation: "Wir wollen einander endlich ohne Spiegelanschauen können."

Fortschritte am Sonntag24 Ärzte und 100 Helfer arbeiten seit Sonntag Frühim Schichtdienst. Die Schwestern sind seitlich amHinterkopf miteinander verbunden, sie haben zwargetrennte Gehirne, teilen sich aber eine wichtigeVene in diesem Bereich.

Sonntag Nachmittag haben plastische Chirurgenbegonnen, die Schädel der Schwestern zu trennen.Dann übernahmen Neurochirurgen und begannen inder Nacht, die Gehirne zu trennen, die durchBlutgefäße miteinander verbunden sind.

Mit Hilfe von zwei Venenstücken aus demOberschenkel einer der Schwestern sollen dann diezerstörten Verbindungen neu hergestellt werden.(Die Venenstücke wurden in einer Vor-Operationam Sonntag entnommen.)

Operation voraussichtlich bis DienstagSind diese Schritte geschafft, müssenSchädelknochen und Haut ersetzt werden. DerEingriff wird laut dem Raffles-Spital in Singapurzumindest bis Dienstag Früh dauern.

Auch wenn bis dahin alles gut geht, wenn es denÄrzten gelingt die Schwestern zu trennen, kann esauch noch später zu Komplikationen kommen: Wiebei jeder großen und langen Operation sindInfektionen oder Blutgerinnsel nichtauszuschließen.



http://www.conjoined-twins.i-p.com/Date: 16.06.06

Conjoined twins

When conjoined twins are born, it's automatically assumed that they should be separated.But, Alice D. Dreger, a Michigan State University medical historian disagrees with this. Shesays that, “When it comes to cases in which one of the twins must be ‘sacrificed’, it isethically wrong to take one life so another may live.” She argues that it is unethical to killone conscious head, given that we wouldn't do that in any other case." She also quotes, "Itis unethical to treat children with unusual anatomies according to a different set of ethicalguidelines than other children."

Alice D. Dreger agrees to the separation of very young twins if the surgery is simple enoughand that it doesn't result in the death or long-term disability of one of the twins. Dregerpoints out that separation surgeries in which one of the twins was sacrificed never aresuccessful. At least nine have been attempted, and none has resulted in any long-term,healthy survivor. "In all of the cases, the intentionally sacrificed twin died," she says. "But,notably, in not a single case has the twin chosen to survive ever actually survived to gohome or even live free of a ventilator."



V. Diary

1. AIDS and human rights

1.1. First decision and first discussion:

We discussed the first dilemma story and we were all of the same opinion, so wedecided that we wanted to read the next story. For us the friendship story wasn’treally a dilemma, therefore it wasn’t a very exciting discussion.

1.2. First research:

First of all we tried to find basic information on HIV and AIDS, then the rights of aninfected employee as in our story.

1.3. Role play:

We divided us into three groups and in each group there were three roles:Michael(a), who is HIV positive and is applying for a job, Franz(iska), the personnelmanager, Johann(a), the boss of the company, who doesn’t want to hire her justbecause she is positive.

1.4. Second research:

This time we concentrated on the rights of infected people and tried to find morearguments for our roles.

1.5. Arguments of every character (which we also wrote on a flipchart):

Michael/a N.:• Qualification• Awareness of the disease• Image of the company• Nearly no risk of being infected• Closing eyes in front of the reality• No discrimination• All people are equal• No need to tell the employer• Medicine (treatment slows HIV down)

Franz/iska:• Discrimination, individual prevention, equality of law• Right to work• Protection of private life• No risk of infection• Qualification doesn’t depend on the disease• Differences between AIDS and HIV



Johann/a:• The risk of infection for other employees• If she got ill we must pay for her• Possibility to collapse during work time• She can disturb other persons• She didn’t inform anyone about medical condition, which is ????• We have the right to know everything about the people we employ• We have the right to be informed about her medical sondition before

employment has been made• She must be supervised all the time by medical specialist• HIV is going to be an epidemic, and we have t protect for this epidemic

1.6. Second discussion:

This time we made a discussion with all the characters which was very interestingand heated.

1.7. Second decision:

Finally we were of the opinion that we wanted another topic with another dilemmastory, so we wrote new stories on our own.



2. The twins problem:

2.1. New dilemma stories and decision for one story:

The stories we wrote in groups were named: The right to live, An unwanted babyand Two children – one life. We voted and decided that the third one is the mostinteresting one.

2.2. First decision and first discussion:

At the beginning two of us were of the opinion that Siamese twins should beseparated as the rest thought that they should stay together.

2.3. Internet research:

Again we tried to find basic facts on Siamese twins and then arguments for thefollowing discussion. It came out that one of us has changed her opinion, finallythere were three people for the separation and the rest were against.

2.4. Discussion:

This was the most heated discussion because everyone was convinced that his/herdecision was the best one and tried to persuade the others. But in the end therewere no changes in the opinions.

2.5. Experiment:

Two of us decided to do an experiment which should show what it is like to beSiamese twins. We took a rope and tied them together on their heads. They tried towalk and sit on a chair and realised that it was quite difficult.

2.6. Last decision:

Although or because we discussed a lot and found many arguments nobody wantedto change his/her opinion.

heart of europe - portfolio...(San Salvador, 5.März 2002, na-poonal).- Odir Miranda, ist 33 Jahre...

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