The importance of disease awareness days: showing our support for pulmonary hypertension
Tuesday 5th May marks World Pulmonary Hypertension Day. In the current environment, it would be easy to let such disease awareness days pass us by.
Those usually doing such essential work to raise awareness for PH patients, like charities and clinicians, are under immense pressure. Many charities in the health sector have found that there is currently an increased need for their direct support and services and they are unable to deliver awareness campaigns in line with previous years.
But disease awareness days are still important - they give us a chance to spread a positive message around support and education, and to remind the community that people are thinking of them and are beside them as much as ever.
There are many people who are particularly vulnerable right now due to other health conditions and PH patients are amongst this group.
PH occurs when the pressure in the blood vessels that carry blood from your heart to your lungs is higher than normal. It forces the right side of the heart to work harder which gradually makes it weaker. This means many PH patients live with breathlessness every day of the year.
On top of this PH can lead to tiredness, feeling faint or dizzy, chest pains and swelling, and if left untreated, even heart failure. The average life expectancy for PH patients is 6-7 years, and the disease is often misdiagnosed.
Awareness raising and maintaining conversations around at-risk groups is essential. This applies to both high profile diseases but also to rare and lesser-known conditions like PH. So many patients, with so many different diseases, stand to be impacted by our current situation.
As a condition that can make breathing difficult, people with PH are amongst those particularly vulnerable right now, living with a rare disease which is little-known amongst the general public.
PH is often difficult to detect - many people might be unaware that their neighbour, friend or colleague is suffering and may need particular help at this difficult time. Fear, anxiety, depression, and stress are common among patients, which will only be exasperated by isolation.
Many of those with PH will be several weeks into self-isolation, away from their support systems, their friends and family and unable to access clinical support in a way they are used to. However, PH day gives us the opportunity to make sure this group still feels heard and supported, bringing the community together to support one another virtually.
Awareness of the disease is low and World PH Day gives us the opportunity to increase this.
The role this day can play in raising awareness around PH is also essential. PH can strike anyone, regardless of age, sex, social or economic background. However, there are several diseases which make your chances of having PH much higher – to raise awareness of the condition, we must involve these groups in discussions around PH so that people at highest risk know what to watch out for.
These high risk groups include connective tissue diseases such as scleroderma; congenital heart problems; sickle cell disease and related conditions; HIV; glycogen storage disorders; problems with the left side of the heart such as mitral valve problems; lung diseases such as chronic obstructive pulmonary disease, interstitial lung disease and obstructive sleep apnoea; sarcoidosis; liver disease and lupus.
For groups with these conditions, it is important to raise awareness and understanding of PH, so they know what to look out for and where to find more information.
Disease awareness days bring people together under a shared positive message
This annual event sees PH organisations and groups around the world participate in World PH Day activities to raise awareness of this frequently misdiagnosed disease and celebrate the lives of people living with PH. Organisations unite with patients to bring attention to the importance of improving the quality of life of the more than 25 million people living with PH worldwide.
The day aims to both increase understanding of the condition and promote the concept of treating the whole patient; the physical disease but also its mental and social impacts. This positive message of caring for the whole patient, and of groups coming together under a shared message, is something I believe should be supported and celebrated during this challenging time.
At MSD, are committed to improving the lives of PH patients and raising awareness, that’s why on World PH day we are encouraging everyone to tweet their support and tell the PH community that we stand #TogetherForPH. So share a video, photo or tweet online and let’s start a conversation and be here for the PH community.
For more information on PH, symptoms, at-risk groups and support services, information is available online at the NHS website and through charities including the Pulmonary Hypertension Association and the British Lung Foundation.
About the author
Verity Thomas-James is associate director, external affairs, at MSD UK
This article was organised, created and funded by MSD.
GB-NON-02661
May 2020
