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10.11.2008 |
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LOTTERY TO FUND RESEARCH INTO RARE DISEASE |
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9.11.2008 |
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Rare Disease UK |
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4.8.2008 |
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Exchange student researches AKU |
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24.7.2008 |
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Major AKU fundraising achievements by our top cyclist volunteers! |
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23.6.2008 |
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New Support section launched on AKU website |
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20.5.2008 |
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Update on Robert Gregory, Manager of the Alkaptonuria Society |
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1.5.2008 |
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AKU at Rheumatology Conference |
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20.3.2008 |
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Introducing the Alkaptonuria Information Centre |
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SUPPORT
One of the principal objectives of the Alkaptonuria Information Centre is to provide support, information and assistance to both patients and carers.
Since the Alkaptonuria Information Centre was launched in January 2008, we have carried out detailed telephone discussions to discover what kind of support Alkaptonuria Patients may need.
Our aim is to act as a bridge between patients and the medical profession; providing an information network which covers issues such as finance, emotional well being, pain management, and carer support. Patients have mentioned these are areas in which they would like more advice so we would like to offer these initial resources as a starting point:
EMOTIONAL WELL BEING
We all know how important our emotions are when managing our health. If we feel depressed, low, sad, isolated or frustrated, it can drain us and leave us feeling exhausted. It can also affect the amount of pain we experience. Studies have shown that when we are happie when we socialise, when we have fun and enjoyment, the experience of pain is significantly reduced.
To boost your emotional well being, there are many counselling services that offer support. You can find out more at the following links:
MIND www.mind.org.uk
The Mental Health Foundation: www.mentalhealth.org.uk
Mental health, psychology and psychiatry: www.psychminded.co.uk
American mental health information: www.mentalhelp.net
Canadian mental health information: www.mentalhealth.com
These websites also give you practical tips to boost your moods and positivity.
CARER INFORMATION
For those people who care for an Alkaptonuria patient, help and support is available. The internet is a good starting point and you will find a wide range of practical information and support on www.carers.org and www.carersuk.org
Carers UK also has a network of local branches across the UK. Run by carers for carers, these local branches run coffee mornings, organise outings and give you a chance to share your experiences with other who know what it’s like to care for someone with an illness or disability.
Visit www.carersuk.org for more information on where the branches are and how to become a member.
You could also ask your GP or Citizen's Advice Bureau about other carer centres or groups that might be running locally.
Another useful support site for carers is www.carersfriend.com
FINANCIAL SUPPORT
For advice on the Disability Living Allowance, Incapacity Benefit and other financial assistance, UK residents should visit http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011731
PAIN MANAGEMENT
Many AKU sufferers struggle with pain which can affect your emotional well being, and vice versa. The Alkaptonuria Information Centre has collated 10 simple ways you can try to manage the pain yourself without the use of prescribed medicine:
10 ways to reduce pain without drugs
1. Try a TENS machine
2. Hydrotherapy
3. Heat bags/ Ice packs
4. Distraction- watching something that makes you laugh
5. Relaxation/Meditation/Hypnosis
6. Visit a Pain Management Clinic
7. Use a Biofeedback machine
8. Acupuncture
9. Socialise – talk to others
10. Yoga/Stretching
OTHER USEFUL RESOURCES
As the most common symptom of Alkaptonuria is osteoarthritis, many of our resources were found on www.arthritiscare.org.uk. This is a good site which has a wide variety of free booklets on all of the above categories.
They also have their own discussion forum at http://www.arthritiscare.org.uk/php/phpBB2
Alkaptonuria Yahoo! Groups
You can also join our own Yahoo Groups which can be found by going to Yahoo.com, looking in the groups and typing ‘alkaptonuria’ or ‘alkaptonuria ochronosis’.
You will find two groups there to join: Alkaptonuria Society and Alkaptonuria Ochronosis.
If patients would like further information on any of these issues, or simply would like someone to chat to about how you are feeling, please do not hesitate to call the Information Centre on 0151 706 4387. All calls will be kept strictly confidential.
TRAVEL INSURANCE
Many AKU patients may find it harder to obtain adequate travel insurance. A patient from the UK has kindly given us a list of her most recommended companies to use:
Freedom 087 0600 1509
Free Spirit 0845 230 5000
Campbell Irvine 01737 223687
Itssoeasytravelinsurance.com 0845 222 4205/2226
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