Presentation about my experience of living with haemophillia for 65 years

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

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

18. Physiotherapy

19. Joint replacement

20. Home treatment

21. Haemophilia Society formed in 1950

22. EducationHaemophilia Support