HAEMOPHILIA FOUNDATION OF NIGERIA
STAND OUT RETREAT 2017 , HELD @ THE CULLEN HOTEL KADUNA
DAY ONE: 19TH MAY, 2017
The first day began with the arrival of participants from Abuja, Benue, Kano ,Kaduna,and Sokoto states respectively.
There were 12 participants and 8 staff of haemophilia foundation in attendance. The Executive Director of Haemophilia Foundation of Nigeria, Mrs Megan Adediran welcomed the participants to this year’s retreat, she explained the importance of the retreat and why as adult patients they need to connect with each other.
ACTIVITY ONE: ICEBREAKER
These involved several games to help participants get to know one another, with participants split into group A and B respectively. The first game was the Grid game where participants were asked to form words form their names.
Mrs Megan Adediran explained how the game goes, the rules and the points to be achieved. The game was anchored by Mrs Megan Adediran, Tola and Nehemiah.
The second game was called “newspaper puzzle”, participants were divided into two groups using ballot, and on both games group A won.
ACTIVITY TWO: HAEMOPHILIA AND ME
A presentation by Mrs Megan Adediran which was aimed at refreshing the minds of patients on what haemophilia is, she stated that the three key words in haemophilia are:
- Inherited: that is, it is not contagious
- The inability of the body to form a clot
- Injury: which can be internal or external.
She further talked about the two types of haemophilia and compared the factor functions in the body with a relay race in which factors VIII and IX in the body do not have the strength to form a clot on their own. She emphasized the need to know what factor the patient is lacking and the severity level. She added that it is very important to know how to calculate ones desired factor intake by multiplying the body weight by desired factor level then dividing them by two for patients with factor VIII deficiency, while patient with factor IX deficiency do not need to divide it by two.
- Body weight × desired factor level (factor VIII deficiency)
- Body weight × desired factor level (factor VIII deficiency)
,. She stressed the need for patients to involve their daughters in the foundation activities in other for their daughters to be more enlightened. Further educating them on sports and highlighted sports they should and should not participate in as persons with haemophilia. Finally she concluded the presentation by asking patients to list out the three golden rules when a person with haemophilia gets to a health care provider. These golden rules are No IM, No aspirin and Treat immediately.
DAY 2: 20TH MAY, 2017
The Executive Director began the first lecture for the day in which she stated the importance of persons with haemophilia knowing their family lineage and the inheritance pattern, using her own family as an example and supporting it with a practical presentation. At the end of her presentation she gave participants an assignment to draw out their own family tree.
ACTIVITY THREE: JOINT PROTECTION
Dr. Musiliu Odunola an orthopaedic surgeon facilitated the session on joint protection. He gave an overview of the history of haemophilia and its origination. He also talked on the major complications of bleeding into the muscles and joints, saying excessive bleeding can result in permanent damage of cartilages and joints. He listed out some long-term complications of bleeding: flection, joint arthritis, chronic pain, muscle atrophy depression etc. He concluded his lecture by talking about signs before bleed starts and asked the patients what are some of their signs. Questions were asked and he also examined some of the patients target joints.
ACTIVITY FOUR: SEXUALHAELTH AND REPRODUCTION
Dr. Dogara LivingStone a Haematologist began the session with major focus on patients being embarrassed about their condition and not being able to express themselves as well as the fact that most patients are scared of reproducing or even getting married for fear of having an offspring suffer the same ordeal. He said having a bleeding disorder should not be a barrier for having a family, at the end of his session, questions were asked and contributions were also made as this was a major challenge faced by adult patients.
ACTIVITY FIVE: COMMON HEALTH CONCERNS AS YOU GET OLDER
A presentation by Dr Abimbola Ariyo. He began his presentation by giving the overall perspective to the topic. He emphasized that better treatment and comprehensive care will help persons with haemophilia reach their golden years, living longer means facing aging-associated health conditions such as cancer and kidney disease. He gave five co-morbidities that aging patients with haemophilia and their providers need to address which are:
- Cardiovascular diseases
- Joint diseases
- Liver diseases
- Renal diseases.
ACITIVITY SIX: IMPORTANCE OF PHYSIOTHERAPY IN HAEMOPHILIA
Mrs Fatima Yahuza a physiotherapist made this presentation in which she started by explaining the goals of physiotherapy which are:
- Treatment of muscle imbalance.
- Ensuring decrease of pain and increase in function
- Stretching to improve flexibility and prevent muscle shortening
- Strengthening the muscle to improve stability
- Posture training
- Correction of harmful and wrong movement pattern
- Treatment of affected or badly damaged joints.
She gave participants the five things to do as persons with haemophilia, these are:
- P- protection of the affected muscle or joint
- R- replace missing factor
- I – immobilize using a splint in a neutral position
- I – ice
- C – compression with bandage
- E – elevation
She stressed that the participants should avoid contact sports, high impact sports or sports with very high risk of bleeding, while stating that suitable sports are; swimming, cycling, walking, dancing and rowing.
Mrs Megan Adediran made this presentation whereby she asked participants for their perceptions on the issue of disclosures. A lot of the participants defined disclosure as opening up, letting people know, awareness etc. she stated that as persons with haemophilia, before disclosing one has to be prepared, be bold. Disclosure should be when a person is ready and the environment is conducive for positive reception. The session which was an interactive one allowed participants to share their experiences. She emphasized that not disclosing also bears its own risk because it is important for relevant persons who can render assistance in a case of emergency to know.
ACTIVITY 2: SELF-INFUSION
This session was handled by Matron Olukokun who taught the participants how to self-infuse, how to calculate their body weight to get their required dosage of factor. She also emphasized on the importance of entering every infusion into their log book for record purpose in case of a reaction or complication.
ACTIVITY 3: INFECTIOUS DISEASES AND THEIR COMPLICATIONS
This presentation was given by Dr Dogara Livingstone, he listed the complications that can occur in haemophilia; musculoskeletal complications, infectious complications (HIV, hepatitis A, B and C) and immunological complications. He spoke vastly on hepatitis, its causes, symptoms and its principle of management. As persons with haemophilia it is important to get screened in every six months and also to get vaccinated. Also stating that when infusing factor, it should be in a sterile environment. At the end of the session questions were asked and were all addressed.
The event came to an end with a little get together where the participants got to connect with each other, shared experiences and skills. Departure was on Monday, 22nd May, 2017