PDF In anteprima l’articolo che Giuseppe De Salvo ha scritto per la nuova rubrica ‘Notizie dall’Europa’ che partirà dal prossimo numero della rivista RITROVARCI. Segue l’articolo pubblicato sul sito dell’EOA sull’Ethiopian Ostomy Association.
L’Associazione Europea Stomizzati (EOA), ha da tempo cominciato a seguire qualche situazione favorevole in Africa con lo scopo di farvi nascere una associazione e di migliorare così la condizione di vita di chi vive con la stomia. Adesso ci sono possibili ‘opportunità’ in vari paesi. In Etiopia il ‘germoglio’ di un’associazione sembra avere attecchito e uno stomizzato di Addis Abeba ha organizzato tre giorni di incontri per me e per Arne Holte (presidente dalla EOA fino allo scorso maggio) con medici di vari ospedali, con una farmacista e con alcuni stomizzati di Addis Abeba e dintorni.
Tanto per spiegarci chiaramente, in Etiopia non esiste alcuna forma di assistenza pubblica per gli stomizzati. Quando un paziente viene operato in un ospedale pubblico, i suoi parenti devono andare in farmacia a comperargli i sacchetti. Io li ho visti e non mi sembra il caso di usare il termine ‘protesi’; a me sono sembrati i sacchetti dove noi mettiamo gli alimenti da surgelare. Vengono poi attaccati vicino allo stoma con del comune nastro adesivo. E già così, questi sacchetti ‘per surgelati’ sono molto cari per le retribuzioni etiopi. E allora vengono svuotati, lavati, asciugati e riutilizzati. In questa situazione pensare alle irrigazioni è un traguardo troppo lontano per essere anche solo immaginato.
Ed Arne ed io, nell’incontro con gli stomizzati ed i loro parenti abbiamo detto che esiste la possibilità di migliorare la loro condizione, prima di tutto con delle tecniche, l’irrigazione, e poi con un’associazione che faccia conoscere le difficoltà di vita di uno stomizzato a chi è responsabile della sanità nello stato. Perché se è vero che oggi la miseria è molto diffusa, è anche vero che l’Etiopia sta conoscendo un periodo di grande crescita economica e ciò che può essere impossibile adesso, potrebbe non esserlo più tra dieci o quindici anni. E quando arriverà il momento, bisognerà avere già preparato il terreno con i politici, i consiglieri dei politici e l’opinione pubblica tutta, per mettere la condizione dei portatori di stomia tra le priorità da affrontare.
Ma torniamo al nostro soggiorno ad Adddis Abeba tra il 22 ed il 24 settembre scorso e al nostro incontro con gli stomizzati. Io le ho viste (erano solo donne) e avevano gli occhi tristi. Sembrava che solo il loro corpo fosse tra noi alla riunione, ma che il loro pensiero fosse rimasto a pensare alla loro disabilità e alla loro vergogna. Però, dopo che abbiamo suggerito di parlare ognuno della propria storia, e che i parenti presenti parlassero delle proprie madri o del proprio fratello con la stomia e che non erano venuti, ho visto quello che succede sempre quando due stomizzati si vedono per la prima volta e riconoscono di avere tante cose in comune: si sentono alleggeriti e cominciano a scambiarsi numeri di telefono e promesse di sentirsi, di vedersi e di non abandonarsi. Una stomizzata l’ho vista sorridere, qualcun’altra ha accennato un sorriso, ma ne è uscita solo una smorfia. Non era più l’unica, ma il peso della sua condizione restava immutato, anche se aveva fatto uno sforzo per ridurlo.
Però questo gruppetto di sei-sette persone riunito dall’ingegner Aberra, che non si era mai incontrato prima, sarà il primo nucleo della futura Associazione Etiope Stomizzati. Ci vorranno mesi, ma ci arriveranno. I medici della Chirurgia del maggiore ospedale di Addis Abeba, Black Lion Hospital, hanno promesso il loro aiuto all’Associazione stomizzati ed uno di loro si è detto interessato a frequentare un corso sulla chirurgia e la cura delle complicanze delle stomie in Italia. La direttrice generale del Black Lion ha promesso che darà tutto l’appoggio possibile per aiutare la nascita e lo sviluppo dell’Associazione. La mia impressione è non si tratti di sole parole. Tutti hanno apprezzato l’attenzione dell’Associazione Europea Stomizzati verso il ‘germoglio’ di un’Associazione Etiope. Abbiamo visitato anche degli ospedali privati, dove a differenza di qui in Europa, i pazienti non pagano niente perché gli ospedali sono mantenuti da donazioni provenienti dalle nazioni ricche. E anche qui c’è stata la massima apertura e dichiarazione di disponibilità di mettere a disposizione della prossima associazione anche le proprie relazioni politiche e sociali.
Sembra che tutti già avvertissero la necessità di un’associazione stomizzati in Etiopia, ma non se ne era mai parlato con altri e tutto restava vago. Ciò che abbiamo fatto io ed Arne è stato di far loro riconoscere che è possibile e realizzabile fondare un’Associazione Etiope Stomizzati indicando a quali vantaggi potrebbe condurre. Dopo esserci incontrati con chirurghi e stomizzati, tutti sono usciti dalla completa indeterminatezza per affacciarsi, almeno parzialmente nel terreno della alla consapevolezza e della concretezza individuando i prossimi passi da fare, pur sapendo che il viaggio sarà lungo e difficile.
Credo che grazie soprattutto al lavoro dell’ingegnere Aberra, stomizzato da 5 anni e che 15 anni fa perse anche una gamba in un incidente nel cantiere in cui stava lavorando, l’Associazione Etiope abbia trovato la guida giusta per nascere e crescere.
Noi intanto dall’Europa non li abbandoneremo, sappiamo bene che il periodo più critico di ogni vita sono la nascita ed il primo anno. Continueremo a seguirli fino a quando sapranno di poter continuare da soli.
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From the 22rd to the 24th of last September, Arne Holte, past EOA president and I, Giuseppe De Salvo, vice president EOA, went to Addis Ababa to help to start an Ethiopian Ostomy Association.
Mr. Aberra W, an Ethiopian ostomate, is already the focal point for the ostomy patients operated in the Black Lion Hospital, the principal hospital of Addis Ababa. He arranged three meetings for us with the doctors of the Black Lion Hospital, with a group of ostomates and their relatives, and with other doctors working in two private hospitals of Addis. We also went to a pharmacy to see the ostomy appliances they could offer – which was like nothing – and too expensive.
In these three days spent in Addis Ababa, we realized that the actual situation of the ostomy people is terrible. They do not receive any appliance supply by the state or the region. If appliances can be bought (not likely) they are dramatically expensive for the average Ethiopian income. In fact the Ethiopian ostomates purchase plastic bags without adhesive and use scotch tape to attach them to their abdomen. Even if these bags are produced in India, they are in any case expensive for the Ethiopian families, and therefore the ostomy people empty the bags and then they wash them, before to wear the same bag again.
In this very hard situation, Mr. Aberra decided to help the other ostomates and to establish an association to reach easier prostheses from foreign charities. For this reason he contacted first Di Bracken who became ill and asked Arne to take over this mission. Arne developed this relationship, and we arrived to this visit of last September.
Meeting with surgeons of the Black Lion Hospital
Our first appointment in Addis Ababa was with a group of surgeons at the Black Lion Hospital.
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left to right: Dr Berhanu Kotiso, Dr Daniel Zemenfes, Arne,
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They explained that the hospital does not have any appliances at all. It means that the relatives of the ostomy patients must buy bags outside Ethiopia. Anyway, they promised to cooperate with Mr. Aberra to establish and to develop the Ethiopian Ostomy Association.
Giuseppe illustrated the importance of a stoma care cabinet which allows colostomates to reduce very much the need of bags thanks to a good rehabilitation which includes the practice of the irrigation. A course on stoma care should be followed by a doctor (perhaps in the Lions Club course taken by professor Carlo Pezcoller in Italy).
One surgeon of the meeting, doctor Daniel Zemenfes, stated to be very interested to attend the Lions’ Club course, and then to work for the opening of an ambulatory for ostomy patients in his hospital.
After this meeting we met the head master (CEO) of the Black Lion Hospital. She is very interested in the establishment of the ostomy association, and she will give all the support that she and the Black Lion Hospital can.
Just to have an idea of the patient’s conditions, we have to know that in the principal public hospital of Addis Ababa and of the whole Ethiopia, there are three classes for patients:
- for paying patients who stay in single rooms;
- for paying patients who stay in double rooms;
- for not paying patients (with documented incapability to pay) who stay in 25-30 beds rooms.
Meeting with ostomates and relatives
Mr. Aberra called five ostomates for this meeting. Two ostomy ladies and the relatives of three other ostomates came to the meeting with him and us. Practically there were six ostomy Ethiopian people, personally or through relatives, and with the participation of a nurse of the
surgery.
Before the beginning of our friendly gathering, Giuseppe noticed that the two ostomy ladies had sad eyes, while the relatives of the other ostomates, a daughter, a son and a brother, had optimistic expressions. The relatives seemed aware to participate to a meeting which could be helpful for their mothers and brother with colostomy. The two colostomates were not able to arise over their feeling of overwhelming difficulties in their present and future living.
Mr. Aberra introduced all the presents to each other and explained also the practice of the irrigation with its benefits. After that Giuseppe spoke about the importance of an ostomy association and of the goals that it allows to reach. Arne confirmed the availability of the Black Lion Hospital doctors and of the general manager to help the birth and the future life of the ostomy association. Arne spoke also of the importance of the good quality of life which is directly linked to the good quality of bags and plates.
After this presentation, Giuseppe asked the opinion of the ostomates and of relatives on the arguments raised by Mr. Aberra, Arne and Giuseppe.
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The nurse told that she has to support both the ostomates and their relatives, but Giuseppe insisted to know the thought of the two ostomates and of the relatives in the meeting.
The first miracle happened: the first ostomate, Mrs. Tenagne, a lady of about 40 years said that she will join the association and help it. Arne proposed that the nurse Lakew (who is brother of a colostomate) changed the bag that Mrs. Tenagne worn with a new good one, and that he could take some pictures during this operation.
Then the daughter of a colostomate 83 years old described the courage of her mother who feels to live well. The second ostomate, Mrs. Eleni, seemed very unhappy because of her complications after the ostomy operation. Now she is under radiation, bleeding and has a lot of pains. A young boy spoke of her mother who was operated few months ago and who is doubt on the continuation of her job. She worked in a library and she is afraid for smells and noises.
But all of the presents consider the association very important because they can exchange experiences. This gathering was the first time that they knew other ostomates. Even Mr. Aberra, who called the meeting, had never seen some ostomates before, because he had only spoken with them by phone.
Mr. Cornel Tesfaye and his wife Mrs. Tenagne Haile Selassi
And overall, at the end of the meeting the ostomates began to speak each other and exchanged their addresses and telephone numbers to continue their relationship.
Giuseppe looked at the eyes of Mrs. Tenagne again, and they were no more so greatly sad, as earlier. The second lady tried to smile, but the expression of her eyes remained still unhappy. It is not easy to be optimistic when we do not see improvements in our suffering condition.
Arne had brought a great number of appliances (samples and so on) which he handed over to Aberra to distribute them.
The private hospitals
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Arne, Mr. Aberra and Guiseppe
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In the afternoon we went to the Fistula Hospital. It is a private hospital which is like a well cared oasis in the great Addis Ababa where it is rare to find so well kept buildings and gardens.
The Fistula Hospital is just for women with fistulas and other damages in urine leads after giving birth. These women during the childbirth did not receive a good assistance and got serious damages. The hospital is completely private and it is fully supported by donations from many foreign countries.
The hospitalized women are all urostomates and do not pay anything; they are completely supplied of good quality bags, and they are forced to manage themselves and to learn a new work for having their own working place. Very often they are abandoned by their husbands and divorced.
We spoke with professor Williams, the director of the Fistulas Hospital, and he found very interesting and important the proposal of a new ostomy association. He will cooperate and give his support with advices and relationships.
Saturday we went with Aberra and Lakew, driver and brother of an ostomate, to the Korean Hospital. Here we had a meeting with a Norwegian doctor, Magne Kiplesund. He told us that they did very few ileo ostomies a year (1 -2). They did maybe about 15 colostomies a year. They could do a lot more, but they had to tell the patients that there were no appliances available from the hospital or the government. Their only possibility was to get appliances from abroad from relatives or friends.
Facing this option most of them went home to die!
Also dr Kiplesund was enthusiastic about having an association for ostomates in Ethiopia, and he made it clear that he would strongly cooperate on all levels with such an organization.
Summary and conclusions:
- Ethiopia has 83mill inhabitants. 50% Coptic Christians, 50 % Muslims. The number of ostomates are unknown. Average living age is 46 years. Most people do not know their exact age – no written info has been made – at least not in the countryside.
- No social system paying for ostomy appliances. Some may get appliances from friends or relatives abroad. Mr Aberra gets his appliances from Friends of Ostomates Worldwide (FOW) in USA.
- Mr Aberra has started the work on establish an association for ostomates in the country – probably a long way to go.
Mr Aberra is very enthusiastic, educated i USA where he worked for six years. He has internet – and mobile phone (if anyone will succeed – it’s him!) - Any association in Ethiopia needs a legal aprovement from the authorities. That seems to be rather easy – and Aberra has started to work on that (may be done via internet). We told them that EtOA (Ethiopian Ostomy Association – just a nickname until further) will be accepted by EOA (in due time).
- All doctors we met applauded the possibility of having an organization for ostomates in Ethiopia. Also the CEO of the Black Lion Hospitals said she would give her support to such an association.
- Doctors at the hospital told us that they would arrange for a room at the hospital where ostomates could meet to talk and to exchange experience.
- The patients we met looked forward to have an association for ostomates, and they were willing to join it and (at least for one) willing to be an officer.
- It will be quite necessary to supply key persons with appliances from abroad for some time enabling
them to do a good job for the association.
We believe that EOA should go on with the commitment in Ethiopia. Arne with his net of contacts and great international experience is now without any position within EOA.
He is willing to take on this responsibility on behalf of EOA.
He will urge the Norwegian Ostomy Association the start a twinning arrangement with Ethiopia.
He and his wife have started to send small portions with appliances to the two women who were present at the Black Lion Hospital meeting.
This commitment has already been approved by Arne’s local ostomy club in Norway which will start collecting samples and “out of date” appliances in order to send them to Ethiopia – in small portions.
15 October 2011
Giuseppe de Salvo and Arne Holte
