Will I make a full recovery?

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Its complicated!

The bad news

First the bad news and there is no escaping this, at the moment there is no cure for EGPA.[20] That's not what you want to hear but better to know this right from the start. Also its a good reason to make sure that your medical team confirms diagnosis and is on top of your action plan.

The good news.

Each individual can be affected to varying degrees and in different ways by EGPA. Hopefully you are lucky and dont have any serious issues but if you do, don't give up.

There is good research going on and new drugs entering the market in the battle to keep the disease under control. There has also been great progress in fixing problems which until recently would have been life threatening.

The unknowns.

To add to the complexity, other factors will influence the pace and extent of recovery. How quickly you were diagnosed and treated, how you respond to the various treatments and how you are continuously managed being important.

You have your part to play too in doing whatever you can to give your body and mind the greatest opportunity to work in your favour.

Reduce complexity.

No internet blues.

Resist the temptation to dig too deep on the internet, true it has lots of good information but also old data, misleading data and plenty that is not relevant to you. This site will walk you through the issues and put context into at least some of the data.

The references on the various pages here are intended to point to resources that give a balanced and recent perspective.

Be patient

It can take as long as 2 years to know whether nerves will fully recover for example. They only regenerate if they are not excessively damaged and do so at a snails pace.

Getting the right medication for you can also take a while.

You may have some setbacks which can be triggered by your desire to push forward. You will find that work and rest are a difficult balancing act!

Be pragmatic.

You may need some corrective work if organs are affected, work with your medical team to check through all the potential issues. Some EGPA conditions can be fixed with a simple operation, others require longer term care and monitoring

Add order.

Manage stress

Find ways of removing stress points whatever they are in your circumstance. [21]

Listen and learn.

Listen to your specialist, ask questions, make notes. Most importantly wait until you have a good view of the big picture before trying to fill in the smaller pieces. The internet is a great tool at this stage. Plus you will feel more in control.

Manage yourself.

You will almost certainly be taking steroids for a long time. One of the side effects can be to increase your appetite, so if you are already a little overweight, start to manage your diet as soon as possible. Monitor your weight regularly.[22]

Regular exercise should also be a practical part of your routine. You will probably need advice on what is best for you.[23]

Work and financial stability may give you challenges. Start thinking this through as soon as you can. You may need to work fewer hours or at some point get a less demanding job.

The outcome.

To answer the question, 'Will I make a full recovery?', even at the good end of the scale, is still likely to mean that you won't be as able as you used to be.

The less complex your life becomes, the better the chance of improved recovery, so start getting the basics in place as soon as possible.

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