Alkaptonuria Society - For AKU Patients

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News and Updates

		10.11.2008
		LOTTERY TO FUND RESEARCH INTO RARE DISEASE
		9.11.2008
		Rare Disease UK
		4.8.2008
		Exchange student researches AKU
		24.7.2008
		Major AKU fundraising achievements by our top cyclist volunteers!
		23.6.2008
		New Support section launched on AKU website
		20.5.2008
		Update on Robert Gregory, Manager of the Alkaptonuria Society
		1.5.2008
		AKU at Rheumatology Conference
		20.3.2008
		Introducing the Alkaptonuria Information Centre

QUESTIONNAIRE

We have put together this questionnaire to try to get more information about Alkaptonuria and a better understanding of the disease.

Could you please complete as many questions as you can, it is important for the society to hold as much information as possible on this condition.

Please note that all information gathered will be kept confidential. Please click here to download the Questionnaire in word version.

Your Details

First Name

Last Name

Title

Street Address

City / Town

Country

Post/Zip Code

E mail address

Phone number

Date of Birth

Sex

Male Female

Marital Status

What is/was your job

When did you retire?

Joints

When were you first diagnosed with Alkaptonuria?

Are you disabled in any way?

Yes No

Have you had any joints replaced?

Yes No

If so please indicate

What other operations have you had?

When were these carried out?

Your Care

Do you receive any help from Social Services, Local Government, your doctor, a nurse etc?

Yes No

Have you had any adaptations fitted to your home?

Yes No

If so, which ones (hand rails, etc)

Do you use a wheelchair?

Yes No

If so, do you use it inside or outside your property

How long have you used the wheelchair?

Who supplied the wheelchair?

If you have had to attend medical check ups to obtain benefits, please indicate

Yes No

Do you use a walking stick or aid etc

Yes No

Do you use a hearing aid?

Yes No

If so, when did you start with the hearing aid?

Physical Symptoms

Do you have marked discolouration of your ears?

Yes No

Do you wear glasses?

Yes No

If so, when did you start to wear glasses?

Have you discolouration on the whites of your eyes?

Yes No

Do you have any brown pigmentation marks on your skin?

Yes No

Do you have any discolouration of your teeth?

Yes No

Do you have any black spots in your nails (including your toe nails)?

Yes No

Do you have any white spots in your nails (including your toe nails)?

Yes No

Have you been diagnosed as suffering with anaemia?

Yes No

Do you have any problems with your elbows?

Yes No

If you have lost height over the years, please indicate how much

Have you started to stoop?

Yes No

If yes when did you notice it?

Have you had any problems with your voice, windpipe, coughing, etc?

Yes No

Please indicate

Have you noticed any shaking of the head or hands?

Yes No

If you have had any problems with your heart (murmur) please indicate

Pain

How far can you walk without pain?

Do you have pain in the following joints

What painkillers do you use?

Do you get lower back pain and how often?

Is you back stiff in the mornings?

Yes No

Do you get joint pain in bed?

Yes No

Do you have problems sleeping due to pain?

Yes No

Have you had any problems with your bladder, kidneys or stones?

Yes No

Have you tried any alternative medicine, homeopathy or acupuncture?

Yes No

If so, has it made any difference?

Yes No

Please advise what difference?

Diet

Do you take any special diet low protein?

Yes No

If yes, has it made any difference?

Have you taken any supplements such as vitamin C and over what period?

Yes No

How long?

Your Doctor

Which medical centre or hospital are you attending?

Which doctor do you see when you attend?

Is he/she a specialist or consultant?

Yes No

Do you have any relatives who suffer from Alkaptonuria?

Yes No

If so, how many?

Do they wish to be contacted and receive information from the Alkaptonuria Information Centre i.e. Newsletters, leaflets etc?

Yes No

Do you wish to undertake any research treatment? This will be carried out as the Royal Liverpool University Hospital, Merseyside, England.

Yes No

Do you wish to receive information on a regular basis?

Yes No

Would you be interested in attending an AKU event

Yes No

Enter the code shown

This Questionnaire is part of a national survey we are conducting over the next two years for people with Alkaptonuria. It can be completed On Line or sent to: The Alkaptonuria Information Centre, Room 2354B, 4th Floor, Duncan Building, Royal Liverpool University Hospital, Daulby Street, Liverpool L69 3GA. If you wish to contact us direct please telephone 0151 706 4387.

Alkaptonuria Website www.alkaptonuria.info

Bev Hebden, Project Manager bev@alkaptonuria.info

Kerry Needs, Administrative Assistant, Kerry@alkaptonuria.info

Please help us cure AKU, a rare genetic disease, by donating online at www.justgiving.com/alkaptonuria UK charity number 11011052