The Society have been keeping in touch with many members by phone and also by our frequent Zoom meetings. Earlier this week, we had a well attended Zoom meeting on Hemlibra for parents with Dr. Beatrice Nolan and Bridin Brady from Childrens Health Ireland at Crumlin joined as speakers by 2 parents: Ellie Heffernan and Therese Ryan. Today there was a Zoom quiz for adults. We hope to be in a position to do a weekly quiz for adults, children or families.
Our main Zoom meetings for the next 2 weeks are as follows:
– Wednesday, May 6th: 11am: Physiotherapy session for adults with the Physio team from the NCC
– Wednesday, May 13th: 11am: Resilience and coping with Covid 19 with psychologists from the adult and paediatric centres
You can join the Zoom meeting via this link: https://us02web.zoom.us/j/9052210070
Covid-19 Updates: Covid-19 and Blood Clotting
An article in the Irish Examiner this week (read it here) referred to a study from the Royal College of Surgeons which reported abnormal blood clotting in some Covid-19 patients. The research team was led by Prof. James O Donnell from the NCC. This is not an unexpected finding. Infection with Covid-19 causes inflammation in the lungs and also thrombosis or clotting. Higher levels of some markers of clotting have been frequently seen in the blood of those infected and prophylactic treatment with anti- coagulants is often used.
The FVIII level also increases significantly in those infected with Covid-19 but not if they have Haemophilia A. It is important to state that there is no increased risk of infection with Covid-19 for people with haemophilia or other inherited bleeding disorders above the normal population risk. If a person with haemophilia does become infected, their risk of death is also no greater than the general population. However, this finding again emphasises the importance of informing your haemophilia comprehensive care centre immediately if you have tested positive for Covid-19 or if you are being hospitalised in any other hospital
Covid-19 and Paediatric shock
There have been some reports from Europe of a paediatric shock like syndrome in a small number of children who have developed severe illness following Covid-19 infection. (No cases have been reported in Ireland as far as we are aware.) It appears to be a multi-system inflammatory state which can include gastrointestinal symptoms, abdominal pain and cardiac inflammation. Severe Covid-19 infection appears to be rare in children and this appears to be a rare complication in a small number of children to date
Physiotherapy
The NCC have been innovative in their use of video consultations for people with Haemophilia in recent weeks. This has included video Physiotherapy consultations. The Physiotherapy team from NCC will shortly be sending out a survey to people with severe Haemophilia designed to give them feedback on the current system for physiotherapy assessment. We would ask that each of you who receive this survey by post would fill it out and return it. We will also circulate the survey electronically for return to the NCC. The data collected will be used to improve and optimise the service
Brian O’Mahony
Chief Executive