World Blood Donor Day: Be­hind the blood

Malta Independent - - FRONT PAGE -

To­day is World Blood Donor day. The aim of the global cam­paign or­gan­ised by the World Health Or­gan­i­sa­tion is to high­light the need for dona­tions. In ev­ery coun­try, in­clud­ing in Malta, there’s a vi­tal ur­gency to main­tain a reg­u­lar sup­ply of all blood groups and types, so it’s avail­able to pa­tients when it’s needed. To put it bluntly, with­out dona­tions many peo­ple would die. Al­though we fre­quently hear of the need for blood sup­plies, we rarely hear where ex­actly the blood goes and the lives be­hind the blood dona­tions. This year’s theme ‘Be there for some­one else. Give blood. Share life’, has a spe­cial mean­ing for 27-yearold science teacher CLAUDINE MUS­CAT, who shares her story with Dayna Clarke

From her first year of life, Claudine was di­ag­nosed with Tha­lassemia Ma­jor, a rare ge­netic blood dis­or­der preva­lent in Mediter­ranean re­gions. There are ap­prox­i­mately 30 known cases in the Mal­tese is­lands. Both her par­ents are car­ri­ers of this fa­tal con­di­tion, un­be­known to them un­til the doc­tor or­dered rou­tine bloods for the baby. From that day on Claudine re­quired con­sis­tent blood ther­apy treat­ment, even to this day she re­quires 8-hour blood trans­fu­sions ev­ery 4-5 weeks with four bags of blood. Claudine is ex­cep­tion­ally el­e­gant, bright, bub­bly and ar­tic­u­late. She works full time, drives and hol­i­days reg­u­larly with friends.

She lives by the mantra: “I will not let this con­di­tion con­di­tion my life.”

Noth­ing in her de­meanour or ‘look’ gives away her con­di­tion as she sat down at Villa Bighi to ex­plain what the im­por­tance of blood do­nat­ing means to her.

“Ba­si­cally, my red blood cells de­gen­er­ate rapidly, and I need new re­place­ment blood ev­ery few weeks,” Claudine ex­plained.

Through­out her child­hood, Claudine never saw her­self as dif­fer­ent to her peers un­til the teenage years be­gan to take hold. At the same time Claudine re­quires fre­quent blood, too much iron build-up from blood trans­fu­sions also re­quired her to have eight hours a day con­nected to a pump for iron chela­tion ther­apy through­out her child­hood.

“At Muzew (re­li­gious doc­trine classes), I be­gan wear­ing a cross body bag, in fact I set off a trend with my peers there,” she joked.

“Though in all se­ri­ous­ness, there were times when I re­belled, when I would fight with my mother as I didn’t want the treat­ment.”

Claudine’s par­ents be­came her car­ers through­out her child­hood, her fa­ther train­ing to in­ject her daily and con­nect her but­ter­fly sy­ringe to the eight-hour daily pump ther­apy.

Claudine be­gan to en­dure this treat­ment through­out the night in or­der not to affect her daily rou­tine.

“I had to sleep al­most up­right to avoid dis­turb­ing the equip­ment, from those 8 hours I would per­haps get one hour of sleep, it would beep when it ended and then wake me up, af­ter it was re­moved I could fi­nally sleep on my front and feel a huge sense of re­lief.”

This daily ther­apy to coun­ter­act the iron build-up from the ad­di­tional reg­u­lar blood trans­fu­sions con­tin­ued un­til Claudine was in her fi­nal year of Univer­sity. It was then that a won­der drug was made avail­able in Malta and Claudine could re­place the 8 hours daily con­nected feed with a pill.

When asked how it af­fected her well­be­ing, she de­scribed painful mem­o­ries of know­ing the drug ex­isted else­where and the wait­ing game un­til it ar­rived in Malta. When the drug landed she had an ad­verse re­ac­tion which was a huge blow. “Doc­tors had to slowly in­tro­duce me to the drug and build up my tol­er­ance.”

Now Claudine is able to take the daily pill, but still must en­dure the 8 hour blood trans­fu­sions ev­ery few weeks at Mater Dei.

Claudine de­scribed the jour­ney of be­com­ing more re­spon­si­ble for her con­di­tion through­out the last 20 years, and how ev­ery­thing must be sched­uled. If she wants to go abroad she is bound to plan trips around her blood trans­fu­sions or face com­plex health or­gan­is­ing in a for­eign coun­try. She de­scribed Sun­days sat at Mater Dei mark­ing exam pa­pers and do­ing any­thing to keep the bore­dom at bay.

“My em­ploy­ers and col­leagues are re­mark­able,” she added. “I be­lieve it is very im­por­tant that my team have aware­ness of my con­di­tion, and they sup­port me whole­heart­edly.”

Claudine is grate­ful that her con­di­tion has found her­self pur­su­ing a ca­reer in the sciences.

This week Es­plora In­ter­ac­tive Science Cen­tre is hold­ing an event re­gard­ing the story of blood trans­fu­sion from donor to pa­tient named “Bloody Late,” an event in which she has been very much in­volved.

“Be­fore the event there will be the blood donation couches set up in Villa Bighi, which is the build­ing of the Malta Coun­cil for Science and Tech­nol­ogy,” she adds. Claudine stresses the im­por­tance of blood donation for var­i­ous con­di­tions in Malta as well as Tha­lassemia.

“Please if you have any ques­tions pre­vent­ing you from do­nat­ing-speak to the blood bank team, do not let any stigma or mis­con­cep­tions put you off. The team have the donor’s best in­ter­ests at heart and not just the pa­tients.”

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