Friends and Family Support.

EGPA and what you might be thinking!

What is it again?

EGPA is a rare form of Vasculitis, which is itself a rare disease. So your loved one has managed to win the equivalent of a big lottery prize, but not in a good way!

Is there a cure?

No, at least not yet but with patience it can be managed, even though it is a serious disease.

Is it a genetic disorder or can I catch it?

No! We know that wasn't uppermost in your mind, right?

What can I do right now?

Don't panic! Find out as much as you can about this disease. There are a number of useful web sites which can help, including this one.[1-4]

Be supportive! Take a concerned interest in what medical support is being offered, which medication and so on. Its best if you can do the research on behalf of your loved one and filter information in a helpful way. The internet is a dangerous place to be digging deep when you are particularly unwell.

How long before things improve?

You will hopefully see rapid improvement within months but it could take several years before the full story is known. It is unlikely that there will be a return to pre EGPA health and there is an 80% chance of a relapse. (Though relapses are normally less severe than the original presentation).

What to expect.

Impact of the disease.

You have probably already recognised the asthma. Most sufferers start with this and maybe some sinus and persistent cough problems.

As the final stage of the disease kicks in there could be fever, weight loss, muscle and joint pain and other symptoms. Peripheral neuropathy is quite common. (Numbness and loss of control in hands, legs and feet).

The body is under severe attack and will be fatigued both from the disease itself and the medication used to treat it.

Complicatioins.

There are a wide range of potential complications which could involve any organ with small blood vessels, including the skin which could break out in rashes or purpura.

Medication.

Corticosteroids are the most effective primary treatment but they have their own side effects, as do other medications, particularly immunosupressants.

All in all, it's going to be a tough battle.

Thinking ahead

Being safe.

Make sure your loved one is safe at home when they come out of hospital. Find out what practical help is needed and ensure that someone is tying the loose ends. You reassurance means more than you might realise.

Being practical.

There may be issues to deal with at work. Employer dialogue at an early stage would be beneficial. What can be done to reduce fatigue or working hours?

What benefits or disability assistance could be claimed?

How will practical issues like weekly shopping be managed? Will someone help or is on-line shopping possible?

Being thorough.

The list could be quite long and nothing like the above but there are surely many questions to be answered.

Looking after yourself.

If you are well, then you have a much better chance of helping your loved one to recovery, so look after yourself first.