Asthma a rare disease??

On the 29th February there was an awareness day for rare diseases. Asthma is one of the most common rare diseases out there. Its rare in its own very special way. It is not in the same category as some of the obscure disease like EB or Battens which are rare due to so few people suffering from them.

You may think asthma is not rare.

One in twelve people suffer from it, every day 3 people die from it, every hour someone is admitted to hospital having a severe asthma attack…so how can it be rare.

I class asthma as rare because despite the prevalence of asthma it is the most complex and poorly understood condition around. Academics spend careers trying to find a cure for asthma, or a new medication to help in the management of asthma but they often never fulfil those ambitions. It is not through lack of trying but due to a lack of funding and awareness of what actually is asthma and what can it do to people.

The common misconception is that a blue inhaler is all you need and all will go away but this is so wrong. Attitudes need to change. Despite the huge numbers of people who suffer from asthma there is the least amount of funding for it. In the research world it is not a sexy enough condition to warrant huge funding grants yet it can be just as devastating as someone who has cancer. The difference being that with cancer there is the option of surgery, chemo or radiation but for asthma there is none of these things. There is nothing that could potentially make it go away. I am not trivialising cancer as it too is devastating but from the outside there are some options to some patients but for asthma it is all about management not cure.

For many with asthma fortunately they will go large periods of their life without much bother from their asthma but there are those who fight each day, have a strict regime if medication to keep well, have to avoid certain things and adapt their lives to fit their asthma.

What is it that needs to happen to make asthma be noticed, and the general public take note and start fundraising, or insititues allocate as much money to asthma research as they do cancer, stroke or cardiac issues.

I long for the day where people stop saying I know someone with asthma they just have a blue inhaler and thats all you need. I get frustrated with people who drown themselves in perfume and then say they are feel asthmatic, they have no idea but sadly until even those with asthma take steps things are never going to change and how can we expect them to.

I guess this is why I think asthma is rare because it is so complex and so poorly understood. I submerse myself in all information I can find yet I still don’t fully understand my condition- a condition I have had for 28 years.

 

In other news I have been back to work now and managing ok. I feel exhausted at the end of the day but enjoying being back around my colleagues and having a purpose to my day again. I have found it tough but onwards and upwards and I am sure all will be ok.

Next week there is the Cross Party Group meeting at the Scottish Parliament for Asthma which will be good to go to. It will be nice to see people from Asthma UK again as well as listen to speakers from the FARR Institute and listen to Aziz from AUKCAR and Sam from Asthma UK. I am looking forward to seeing the MacDonald’s again. I met them at the end of last year after their daughter tragically died from an asthma attack in her sleep leaving her wee boy in their house. he is now looked after by her parents his grandparents. I am looking forward to seeing them although I did find it hard last time listening to their story about Lydia and her asthma attacks as they are so like my own. I am not sure how I will be at the CPG as still coming to terms with the attacks from the start of this year but I must be strong and think I am still here and they don’t need to see me upset.

Anyway here is a photo from today with a wee chappy who never fails to make me smile!!!

 

IMG_1567

A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!