In this week’s EHC Now! we want to shine a light on some things that have not changed for our community despite the COVID-19 pandemic.
Importance of seeking medical attention!
It has been reported that people across Europe are avoiding seeking medical attention for many illnesses due to fears of exposing themselves to the virus, and this fear has also spread regarding seeking medical care for their bleeding disorder. We want to encourage our members to please see their specialist for any medical issues you may have but particularly to seek treatment for any bleeds in order to avoid serious or long-term damage. Many comprehensive care centres have introduced forms of telemedicine since the pandemic began which has been a great source of comfort and support for many patients. However, while we are encouraged to stay at home in order to stay safe, it is important that we do not neglect our health and attend the treatment centre where necessary while taking the standard safety precautions, such as washing hands and wearing face masks. If in doubt, give a call to your centre before getting there so that you can receive the most adapted information on accessing the centre.
To find the nearest centre near you go to http://www.euhanet.org/centrelocator/
Monitoring of Hepatitis C!
Another issue that stays relevant for the bleeding disorder community is the long-term monitoring of a patients’ liver who may have been treated and cleared of hepatitis C. Recent analysis of EUHASS data, a register of adverse events in the bleeding disorders community, still report liver cancer as one of the most common adverse events and liver failure being the leading cause of death in patients with bleeding disorders in Europe. With the steps taken in the right direction by clearing hepatitis C, in the next 3-5 years this will become a situation of the past.
However for now, we must be mindful of the existing liver damage a person may have had when they received treatment for hepatitis C and cleared the virus. Even though the virus is cleared, monitoring of patients with more severe liver damage (late stage fibrosis or cirrhosis) in the time they received treatment, needs to be an essential part of comprehensive care. EHC strongly recommends performing Fibroscan or blood tests during the annual checks, preferably carried out at the HTCs where these services are available. The liver is able to replace damaged tissue with new cells over time, which particularly has benefits for patients with earlier stages of fibrosis. The effect may not be as large with the later stages as this may not happen as much or as quickly, so monitoring should remain a part of routine care.
Some of the main comprehensive care services for people affected by rare bleeding disorders may be limited at the moment to emergency procedures, particularly dental care. However, two of our colleagues Dr Alison Dougall and Dr Kirsten Fitzgerald provided us with some useful information and tips for maintaining good oral health to manage the disruption of dental services. As is always the case, dental care for people with bleeding disorders is an important part of comprehensive care so we encourage our members to contact their treatment centre if you are experiencing significant oral health issues.
Importance of physical activity!
With serious restrictions on our ability to be active outside of our homes, we are mindful that physical activity is not only important for our physical health but also our mental health. The EHC are doing what we can to encourage our members to maintain some physical activity in the comfort of their own home. The EHC #thisway campaign is going strong by virtual means!! Check out the EHC Facebook videos and follow announcements for the upcoming monthly sessions.
To minimise the impact of the pandemic on the mental health, please consult EHC advice on psychosocial wellbeing: