Rare Disease Day

Good Morning everyone. Today is Rare Disease Day.

This has been a difficult year for everyone but those of us with rare diseases it has been especially hard. We have had to learn a new way of coping. Routine face to face check ups have been stopped and then the added fear we are clinically vulnerable. Video appointments have been good if we feel okay but when we have concerns it is always reassuring when we have a face to face and doctors see how badly we walk into the consulting room or how breathless we are.

I know when I first got my Clinically Vulnerable letter from the government it was a real wake up call. Now I have been ill all my life but when you receive something saying you are at a high risk of not recovering from Covid-19 it seems to hit home. It is not just me it has a knock on effect. My husband has had to isolate with me as he is my carer.

Today also gives us a voice to shout out to medics, general public and decision makers that there is a need for more awareness and access to care. Rare diseases can affect 1 in 17 in the UK. Rare diseases are individually uncommon but collectively there are over 6000 conditions and Aspergillosis is one of them.

1 million people worldwide can be affected by Chronic Pulmonary Aspergillosis. 50,000 people can develop Acute Invasive Aspergillosis in the EU and USA. Aspergillosis covers a spectrum of diseases. It can be an allergic form or a chronic infection. Both get misdiagnosed on a regularly basis. For World Aspergillosis Day we had a “Think Fungus” campaign. If antibiotics do not work and asthma treatments are not working dare to think rare. Early diagnosis and treatment helps outcomes.

So please everyone help the rare disease community and support us today. Please follow us on twitter @aspertrust and retweet all our Rare Disease Day posts. We need your support together we are stronger.

Your can read patient stories at Patient Stories – Breathe (aspergillosistrust.org). These are all people that have been diagnosed with Aspergillosis, one rare disease. This can be affecting so many people feeling unwell and not able to live a normal life all over the world. As I mentioned before there are over 6000 rare diseases.

Aspergillosis Trust supports everyone worldwide with this chronic condition please have a look around our website.

I hope you all feel able to help.

Before I go, I cannot do a blog without a piece of music. Music gets me through the bad days so this is only one I can think of and I know I have used it before but it is very apt.

Stay safe everyone and thank you in advance.

Take care. x


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