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Living with hemophilia
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Living with hemophilia

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Presentation about my experience of living with haemophillia for 65 years

Presentation about my experience of living with haemophillia for 65 years

Published in Education , Health & Medicine
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Transcript

  • 1. Living with Haemophilia
    Clive Richards
    Haemophilia B – a rare bleeding disorder
  • 2. First written reference circa 100 AD
    male infants exempted from circumcision if three older brothers had died from bleeding
    Children of second marriages circa 1100ADsuggesting an understanding that it might be an inherited problem
    First modern description of haemophilia in 1793Consbruch of Germany
    First successful blood transfusion treatment 1840
    By Samuel Lane an English Physician to treat post operative bleeding in a haemophiliac boy
    Haemophilia a modern condition?
  • 3. Queen Victoria’s son Leopold born with haemophilia 1853
    1904 Tsarevich Alexei was born and “treated” by Rasputin
    And in 1946……
    Haemophilia a Royal Disease
  • 4. Haemophilia MY genetic story
  • 5. Haemophilia Christmas disease
    Until the 1950’s all referred to as Haemophilia but in 1952 factor IX deficiency was discovered and Named Christmas Disease after the first patient Stephen Christmas – now more commonly called Haemophilia B
    Various hospitals and doctors failed to diagnose me because no history was known – eventually came under the care of Great Ormond Street and diagnosed around age 4 transferred to St Thomas’ at 16
  • 6. Haemophilia the effects
    Joint and Muscle bleeds
    Severe if untreated
    Can lead to arthritis and other complications
  • 7. The not so good
    Painful episodes
    Felt “different”
    Hospitalisation
    Excluded from sports
    Shy to discuss
    Missed events
    My daughter a carrier
    Travel for treatment
    Haemophilia Christmas disease
    The good
    Time off school!
    Felt “special”
    Hospitalisation!
    Hell I was lazy anyway!
    Liked the interest
    Given extra treats
    ……….
    Home treatment
  • 8. Haemophilia related problems
    Haemophiliacs don’t bleed any quicker than anyone else but left untreated they bleed for longer
    HIV
    ACCIDENT AND SURGERY
    DENTAL TREATMENT
    A more likely cause of death for haemophiliacs who lived through the contamination period than trauma
  • 9. Until 20th century life expectancy just 13!
    Alexei probably had haemophilia B like me!
    Blood Transfusion
    Topical application of Lead Lotion
    Plasma frozen concentrate from 1960’s
    1970 Home treatment possible with factor IX
    1980’s heat treated viral free factors introduced
    1997 recombinant factor IX introduced
    2010 Trials of long acting factor IX underway
    Haemophilia treatments
  • 10. I was very lucky!
    • The NHS started two years after I was born!
    • 11. My father took on extra work to pay for investigation
    • 12. I got into the system early and in pioneering hospitals
    • 13. My parents devoted time and money to my care
    • 14. They also “fought the system” for me
    • 15. My mother made right choices without guidance
    • 16. I have led a near normal working & family life!
    BUT READ RICHARD’S STORY
    http://www.tellingstories.nhs.uk/transcript.asp?id=46
    Haemophilia reflections
  • 17.
    • Dedicated haemophilia centres in hospitals
    • 18. Physiotherapy
    • 19. Joint replacement
    • 20. Home treatment
    • 21. Haemophilia Society formed in 1950
    • 22. Education
    Haemophilia Support