How do I recognise a bleed?
You may feel pain, heat, tingling or bubbling sensations together with swelling and stiffness.

If you are a parent and your child is very young, you may notice difficulty using or straightening a joint. The joint may appear swollen and feel hotter than the same joint on the other side of the body. You may notice your child limping or avoiding putting the heel on the floor when walking or standing.

Your doctor or specialist nurse will have told you more about how to recognise a bleed.

I think I have had a bleed - What do I do?
Steps to follow at home if you have a bleed:

• Administer factor replacement as soon as possible following a bleed
• Start to follow the PRICE regimen. You can download a copy of this regimen by clicking this link
• Contact the Haemophilia Centre to report the bleeding episode and arrange an appointment with your Nurse or Physiotherapist.

Who do I call?
Call the Auckland Haemophilia Centre on (09) 307 4949 x25285 (8.00am - 4.30pm Monday to Friday).

Outside of normal working hours, weekends and public holidays:

Children: Please go to the Children's Emergency Department, Level 2, Starship Children's Hospital at the Auckland City Hospital Site (Grafton).

Adults: Please go to the Emergency Department at Level 2 of Auckland City Hospital.

Please remember to tell hospital staff either that you have been diagnosed with Haemophilia or have a bleeding disorder. Please remember to bring your factor replacement product with you.

What should I do when the bleeding has stopped?
Bleeding usually stops within a few hours once factor has been administered.

Once it has stopped, it is important that you start using your affected joint or muscle again as pain allows. This is to minimise stiffening of the joint and loss of muscle strength.

If the bleeding is in your leg, it is a good idea to keep the weight off it for around 48 hours by using crutches. It is important to remember that rest is NOT the same as immobility. You need to move the joint little and often, increasing as pain allows.

You may need to use ice, compression, crutches or other walking aids for several days after a bleeding episode, and it is always better to use crutches than to ‘hobble’ around on your leg, as this can cause further bleeding.

Now is the time to start thinking about booking an appointment with your physiotherapist. Your nurse or doctor can refer you for rehabilitation. You may need to organise time off from work or school so that you can attend your appointment.

How long will I have to wait?

For new bleeding episodes, after you have contacted your specialist nurse, who will assist in providing acute treatment . The physiotherapist will aim to contact you within 24 hours of referral. You will be offered a physiotherapy appointment within 5 working days of contact.

Why is treatment important?

It is very important that the bleed is treated quickly. This minimises the damage that can occur at a muscle or joint following a bleeding episode.

Rehabilitation is important soon after the bleed has been treated with factor and PRICE, as delayed treatment can increase the risk of further joint damage and may lead to changes in the whole limb which can increase the risk of further bleeding.

Physiotherapy can also be very useful to those patients with existing long-term joint damage. Many older patients affected by haemophilia have significant joint damage, where pain is more often due to the arthritic changes that have occurred rather than ongoing bleeding episodes.

It is important that patients with existing joint damage see a physiotherapist regularly to ensure that they are receiving the right forms of treatment, as pain related to joint bleeds and pain related to arthritis are managed in different ways and complete jouint scores .

• What to do if you Have a Bleed.pdf.pdf.pdf.pdf.pdf.pdf.pdf.pdf.pdf.pdf.pdf.pdf (PDF, 115.6 KB)