Haemophilia

Patient curated information about

Haemophilia

Learn more about your condition from other patients like you.

View answers to all the questions submitted by our community, rank the unrated questions to determine their usefulness and submit questions that you want the answers to.

Find out the preferred blogs, support groups, organisations and more in our top five lists.

Your Questions

How has your diagnosis changed your outlook on life? Please select one answer that is most appropriate to you.

Please select one answer

It has made me more determined and focused to live life to the full.

%

It has made me more fearful of the future.

%

I have accepted it is part of me and my makeup and won’t let it hinder me in anyway.

%

It has stopped me from achieving or doing the things I wanted to do.

%

It has impacted my family more and I worry about the pressures on them in the future.

%

I am more anxious than I was and worry about what is to come.

%

Made me realise that I need to look after myself and make proactive decisions about my health.

%

It hasn’t had any impact on my outlook.

%

Next Question

How useful do you find this question?

Average Rating 6.5

Top 5s

Websites / Forums / Blogs Apps Activities / Alternative Medicines Diet / Vitamins / Supplements Books

Websites / Forums / Blogs

1

Patient.co.uk
Patient.co.uk includes forums for asthma patients, lists patient support groups and disease information plus a blog on asthma by Dr Sarah Jarvis
2

Blood Brotherhood
Blood Brotherhood is a national (US) program for adult men, diagnosed and living with bleeding disorders. It is designed to be a multi-avenue outreach, to provide education and support, promote good health, and establish a sense of community for adult men.
3

Haemnet
Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.
4

Haemophilia Care Parent blog
Written by parents for parents caring for a Haemophilia child
5

Haemophilia Health
myFusionZone is a patient support program that provides information about treatment and a healthy lifestyle for Australians prescribed a Pfizer haemophilia product.

Apps

1

FactorTrack
FactorTrack is a personal, interactive application designed by Bayer HealthCare Pharmaceuticals, Inc. to help make it easier to track and record your hemophilia A Factor VIII infusions. For those on a prophylaxis regimen, it also offers you a reminder system to help make it easier to remember when to infuse.
2

Haemtrack
Record your infusions on the go and upload them to your Haemtrack account to allow your Haemophilia Centre to view/review them.
3

HemaGo
HemaGo is a smart, discreet mobile tool that helps you manage life with a bleeding disorder from your mobile device or personal computer. HemaGo was developed by Novo Nordisk and created in partnership with people living with bleeding disorders
4

HemMobile
HemMobile™ is designed to help hemophilia patients/caregivers using any factor replacement product log infusions, bleeds and activity and stay aware of general health and wellness.
5

Hemophilia Transfusion Recorder
This application's target is only hemophiliac using 'Koginate-FS'. This app works as OCR to caption and recode injection data which are product id, date, quantity and bleeding site of the hemophiliac.

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