Hi I’m Amy, I work for Asthma UK and am currently working on a project about severe asthma. I would be extremely grateful if you could help me with this.
We are looking to develop an area of our website specifically about severe asthma. We would like your advice about the kind of information you would like in this section and what you would like it to look like? Any ideas and suggestions are very welcome!
Also, if you would be interested in commenting on draft content and making any suggestions before its release please contact me - adouglas@asthma.org.uk
Yes, It would be a good idea but we need to be careful not to scare or worry mild to moderate asthmatics! (or ones temporarily out of control) I find a lot of people pick up on the label of 'Brittle Asthma' and use it without a correct diagnosis from a tertiary specialist asthma centre.
Also emphasis needs to be put on correct use of nebulisers too and why they are not generally prescribed for home use.
Will have another think and feedback..............
Kate
Would be good to know what the latest thinking on medicine combinations is for tackling severe asthma. And perhaps having some examples of how people cope on a day to day basis.
Have left a message for you to contact me on your phone!
I would also like information on other less known treatments. When I had my subcut pump installed the only information around was through the forum and not through official sources. Things like methotrexate etc has very little information on.
I would also like information on pregnancy and severe asthma as this seems to be lumped in with normal asthma and it would be interesting to know the differences!
First of all maybe a clarification as to what Severe asthma is?
Someone said that we do not want to scare mild/moderate asthmatics, which i totally agree with.
However, I think that asthma is too often brushed aside as ""nothing serious"" and I think this is wrong. If you look at the thread ""things said to you as an asthmatic"" there are so many examples of people treating severe asthmatics as people who are obsessed with their condition or over dramatic about its seriousness. I would like to direct family members to this future page to highlight how bad asthma can really be and that it is no joke. That it is just as serious as diabetes for example.
How do you guys feel about the above? it might just be me thinking this way!
Lizzie xxx
I think maybe further explaination of what BA is, with emphasis on how it is diagnosed and what makes one a ""brittle"" asthmatic.
Also again, more information on the use of nebs at home, and why theyre not the 1st choice for asthma management. Also maybe even another information document about how BA affects those who have it.
Would be nice to have a definition And criteria for servere asthma, as some folk think as there asthma is difficult to manAge that there must be classed as servere but only taking a reliever and preventer
Drug management and side effects. With more information on these side effects , I took steriod induced diabetes. Web sites only list it as a side effect with no other info available as to duration and treatment ..
Possible benefits available
List of other support agencies
Great idea. There seems to be lots of people with brittle/ difficult to control asthma on the forum pages. I think it needs to be factual this way it would not scare or upset people. Info on meds would be great as it's difficult to find info on this. I'm not sure a definition is 100% necessary as anyone with asthma who do not feel controlled may find it useful
Great idea. Good luck
Truly x
Thank you!
Hi all,
This is all really interesting thank you.
You may be pleased to know we are writing up information about medicines, side effects and benefits available at the moment. I will be in contact individually about your comments via email and Katina - I will give you a call today.
Please feel free to let anyone you think may be interested in this work know about the project, as we would like as many volunteers as possible to look the information we produce.
Thank you again and please keep your comments coming if you have any others!
Amy
Sent you a PM X
hi I think it would be a good idea as people say do not want to make people scared who are new to asthma though.
It would be useful to say what treatments are available to us severe asthmatics when you do not know what options are available are how long they can work for if they do
Hi,
I like the prospect of there being more information available about the less common drugs used to treat people at the more severe scale of the spectrum, especially newish therapies such as Xolair.
In addition though it would be great if there could be information/discussion on the other parts of life affected by the condition. For example the difficulty in holding down a job (if at all) and the pressure placed on relationships/family life. I would definitely be great if there was more information about pregnancy during severe asthma- and the associated safety aspects.
Also, as a severe asthmatic- like many others on here- I have very frequent and often quite lengthy hospital admissions. Not only can these be scary and isolating at the time but they put a huge pressure on all aspects of not only my life, but that of those around me. It would be useful to have more information on how to cope with these situations. Especially if some of it was aimed not only at us, but those who have to sit back and watch what happens to us!
I hope that helps a bit?!
Sarah
i would just be instrested on the basic parts of the severe asthma, like how the symptoms are different to mild asthma, what treatments help, and how severe asthma is differnt to others etc, as i was diagnosed with mild asthma as a baby but has changed to severe in last year and dont know much info n
My opinion is that its very difficult to give a true definition to severe asthma.
I have difficult asthma and suffer a lot of asthma symptoms currently I am on stage 4 treatment and am on montelukast, phyllocontin, spiriva, serevent and flixotide 500 twice a day in addition I have ventolin inhaler and nebs, saline nebs and as required pred. Last year I had two admissions and 7 courses of pred but my lung function is brilliant and to that end I question whether I am a severe asthmatic but some people state that severe asthma is defined as a lung function less than 80 per cent.
I believe that the definition should go as much on a persons experience with their asthma, the level of meds they require as well as ""hard facts"" it is well known now that there are a wide range of factors that influence how a persons asthma will affect them and this needs to be taken into taken into account for example my consultant believes that I have very twitchy airways.
I would like as much information as possible that is factual and helpful.
Thanks
gill
first and most important question that needs clarification is the definition of SEVERE ASTHMA. think Gussypoo hit upon that point as well.
one more thing...
and that people CAN have asthma and CAN have SEVERE asthma WITHOUT A WHEEZE!
lizzie xxx
I think that there is also lack of infomation for people who have difficult asthma. I would describe my asthma as moderate and very difficult to manage. Currently I am taking Salbutamol, monelukast, seretide and atrovent and have had several courses of steroids, and still I have had a few visits to A&E, but I wouldnt say that my symptoms are bad enough to be classed as severe, they are just very unresponsive to treatment.
I think that infomation about the less common meds that are available would be useful. It is really easy to get infomation and advice about seretide but when you start trying to find out about spiriva, sodium cromoglycate and other meds like that, it is more difficult.
i think the defination of severe asthma is preety clear, the problem here is that people thinking that others dont have severe asthma but hard to manage just based on something they have read when they dont know what goes on behind closed doors, we dont know what everyone else asthma is like as everyone is differnt, if someone has been told by a health professional that thier asthma is severe then it is, and people cant just go assuming that it is just hard to manage, sometimes that can aslo be true but depends on the individual as it is possiable for peoples asthma and breathing to delcline over months or years.
agree with you lizzie, regardless of how bad there asthma is or not, not everyone wheezes, i have had asthma all my life and have only wheezed when have had a chest infection
Surely severe asthma is hard to manage by definition??
Considering most consultants are unable to clearly define what severe asthma is, i'm not sure it's something that's possible for asthma uk to do?
Considering most consultants are unable to clearly define what severe asthma is, i'm not sure it's something that's possible for asthma uk to do?
As much information as possible would be good. I would be particularly interested in treatment options e.g. I am at step 5 and still unstable so where do I go next?
Thank you and a question
Hello again,
Thank you all so so much for your advice on this! Just a reminder - if you would like to help look over any information we produce or advise further on this project please drop me an email adouglas@asthma.org.uk
At the moment we are working on a project to help people with asthma who may need support with Financial Assistance and Welfare Benefits. If this has affected you we would love to hear from you to find out your experience. Please drop me an email if your interested.
I would like to know why I was refused a blue badge and DLA before it was PIP and I cried when the DWP reduced distance covered to 25yds from 50. I was eventually medically retired and asked if I should because of the drop in income but I have never regretted it. Would have really appreciated advice then.
info can never be enough
hi amy
please email me!!
as u know i am brittle asthmatic. i would welcome any info!! i struggle finding any inf relating to support groups also. its quite lonely/ isolating having 2 go back + forth 2 hospital every other week or so and missing work (especially in my job) and that makes me scared of losing my job... so info on my rights would be handy.
info aimed at educating HCP would be cool as they seem not to knw what they talking about smetimes, dont listen to you, and if u not a 'textbok' asthmatic then tough!
financial assistance, prescriptins etc....
um.... ???
hope this helps!!
x
would love to read info.Im on step 5 severe and bit scared when see my con on Thursday might say brittle as not controled and taking over my life at the moment xxx my email is on my contacts but will pm it you x
It might be worth creating some information about severe asthma that can be issued to workplaces it could help First Aiders' when having to deal with someone who is having an asthma attacks I know that each persons symptoms can vary but maybe general guidelines.
Hi Amy
I think its good idea. It will help lots of asthmatics if there is a specific section. It could help a lot of people understand whats happening & save some worrying when we dont know whats going on
As someone who doesn't have 'normal' asthma, I've found getting treatment and advice really hard. I've read the AUK downloadable booklets and they've been a brilliant help - I would have struggled so much more without them.
I'm so lucky not be bad all the time, I am described as 'brittle' and can be fine and then all of a sudden acute symptoms will hit me. I've got to learn the warning signs but no-one seems to act if my peak flow has been stable - this makes no difference to me - which I keep saying.
I've also experienced the 'no wheeze, no treatment' scenario, unable to talk at one point and another time struggling to even walk around the kitchen to make a meal. A few docs have recently told me if your airways are very constricted you wont wheeze.
Over the last year I've improved and started to gain control and reduce meds, I owe a lot of this to information from your website, asthma nurses and people using the talking points as well as which of my docs to see.
I feel unstable and non wheezing asthma is still very much an unknown area and many medical staff don't know how to treat it.
It would be a brilliant help
: )
Did I miss the release or is this still a work in progress? Thanks.
S.Mama
Maybe add preventative breathing techniques on here.
I have severe asthma and recently had a massive turnaround at dropping my body weight and spending a lot of time on breathing techniques and yoga, qi gong, pilates etc etc. I think these help me to control the severity of my random attacks. The techniques would help everyone with asthma as it stop the sufferer going into a panic mode.
Definitely a great idea and possibly the only thing lacking form AUK.
I know there is an asthma and work section but severe asthma and working would be great. Things about rights help and support would be good as I am almost fearful of telling anyone I have asthma and especially how severe it is - which I know is rediculous really but just so desperate to not be told I am unfit to work or get looked over because of the risk of having time off.
Help with prescription charges and medical equipment.
Better information of step 5 and what we can do when we .are still dipping (OK this may be kind of impossible or called hospital but would be nice)
In a dream world is it possible to catergorise and explain possible treatments available at different stages?
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