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Airing Pain 86: Sickle Cell Disease

Patient and clin­i­cian per­spec­tives on liv­ing with Sick­le Cell dis­ease and the impor­tance of a mul­ti­dis­ci­pli­nary approach

This edi­tion has been fund­ed by dona­tions from Pain Concern’s friends and supporters.

An esti­mat­ed 15,000 peo­ple in the UK are liv­ing with Sick­le Cell dis­ease and at least 250,000 are car­ri­ers. Dr Eliz­a­beth Rhodes explains the caus­es and symp­toms of the genet­ic blood dis­or­der, the areas where it is most preva­lent and who is affected.

One such patient is Khadi­jat Jose, who describes her expe­ri­ences grow­ing up in Nige­ria and why being a car­ri­er of the dis­ease is an advan­tage in coun­tries with Malar­ia. For those with the con­di­tion how­ev­er, each day can bring severe pain often requir­ing admis­sion to hos­pi­tal. Dr Oliv­er Seyfried high­lights the life-lim­it­ing effects of this pain, espe­cial­ly on young peo­ple, and the chal­lenges it pos­es in all spheres of life.

Self-man­age­ment is there­fore huge­ly impor­tant for those with Sick­le cell dis­ease, whether the pain expe­ri­enced is mild or severe. Paul dis­cuss­es the dif­fer­ent approach­es tak­en by the Red Cell Pain Man­age­ment team at St George’s Hos­pi­tal with clin­i­cal psy­chol­o­gist Dr Jen­na Love and spe­cial­ist phys­io­ther­a­pist Rebec­ca McLough­lin. Both empha­size the impor­tance of being able to tack­le sick­le cell pain from an emo­tion­al and psy­cho­log­i­cal per­spec­tive as well as a phys­i­cal one.

Thanks to progress in med­ical train­ing and increased aware­ness, the qual­i­ty of life for Sick­le Cell patients con­tin­ues to improve. Dr Oliv­er Seyried and Dr Jen­na Love men­tion the nation­al sick­le cell screen­ing pro­gramme and par­ent edu­ca­tion, on which more infor­ma­tion can be found here: https://phescreening.blog.gov.uk/category/sct/

Issues cov­ered in this pro­gramme include: Sick­le cell dis­ease, the mul­ti­dis­ci­pli­nary approach, young peo­ple, anaemia, bone pain, sharp pain, flare-ups, trig­gers, stress, relax­ation, vas­cu­lar necro­sis, activ­i­ty-rest cycle, psy­chol­o­gy and men­tal health.


Con­trib­u­tors:

  • Dr Eliz­a­beth Rhodes, Con­sul­tant Haema­tol­o­gist at St. George’s Hos­pi­tal in London
  • Khadi­jat Jose, PhD stu­dent at Cardiff University
  • Dr Oliv­er Seyfried, Con­sul­tant in Pain Med­i­cine and Anaes­the­sia at St. George’s Hos­pi­tal in London
  • Dr Jen­na Love, Clin­i­cal Psy­chol­o­gist at St George’s Hos­pi­tal in London
  • Rebec­ca McLough­lin, Spe­cial­ist Phys­io­ther­a­pist at St George’s Hos­pi­tal in London.

More infor­ma­tion:

Comments

I am real­ly over­whelmed and also give kudos to the con­trib­u­tors. I also acquired more knowl­edge and confidence.

Broadcast Assistant

Thanks Iaw­al, we’re glad you found the pro­gramme inter­est­ing and infor­ma­tive as well as confidence-boosting!

Comments are closed.

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