Yet another question for the inexperi... - ITP Support Assoc...

ITP Support Association

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Yet another question for the inexperienced like me.

Jordan1991 profile image
10 Replies

Just wondering guys if there were any benefits that can be claimed for having ITP? Currently off work and will be for at least another month and my money situation is getting terrible. Was looking into PIP and some other benefits. Any help would be greatly appreciated! I live in the uk.

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Jordan1991 profile image
Jordan1991
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10 Replies
AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

No , ITP does not qualify for any benefits in the UK

NickyD profile image
NickyD

I worked throughout having my ITP and did not take time off.

sailor profile image
sailor

Unless you are bleeding, why are you off work?

Jordan1991 profile image
Jordan1991

Im still getting bleeding sometimes and my platelets haven't gone above 30 yet and just starting my rutoximab treatment. She's got me off for 6 weeks+ :( hopefully will be back at work soon!

Lin6 profile image
Lin6 in reply toJordan1991

Bless you, hope you feel better soon.

I was on the sick for 6 months due to prednisone making me feel very dizzy, Luckily work paid out sick pay at the time and we had good mortgage insurance. All well now am back to work full time tho platelets have dropped a little but still fit to work with no medication.

Hope you get good results with new treatment.

Lin

4ladylove profile image
4ladylove in reply toLin6

Lin6

Did u say you don't take any medication? Do u mind saying what ur platlets numbers are normally?

Jordan1991 profile image
Jordan1991 in reply to4ladylove

Well I'm currently on medication, was only recently diagnosed so still on steroids and have just finished my 1 month rutoximab treatment which was intense lol. My platelets are 91 atm (they were 2 when I found out about my disease)which is the highest they have been since being diagnosed. Have no idea how aggressive my ITP is though until I'm drug free and they start dropping again. Going back to work next week though which is good news!! Just have to be careful not to get a cold with my very bad immune system now!! From the rutoximab treatment! If it's not one thing it's something else haha :D

Lin6 profile image
Lin6 in reply to4ladylove

Hi, my platelets were 7 when I was diagnosed July last year, over the 6 months they went up and down but by January this year got up too about 128. With 6 months of prednisone 80mgs. They have dropped a little now 108 but my consultant very happy and me too as holding with still no meds and don't have to see him till December.

Hope you all ok with you

Lin

4ladylove profile image
4ladylove in reply toJordan1991

I understand why jordan1991is asking about benifits.because like my daughter she had to stop work because this disease is so uncertain and she was afraid of being at work and get one of those crazy nose bleeds with no warning.so she's been out of work for 5yrs and couldn't find an insurance company to cover her so had to apply for Medicaid.applied for disability and was turned down'so her only means comes from her family!! Ask question and do what u need to suport yourself!!😀God Bless

Milane profile image
Milane

When you are back to work, check if there is a disability insurance you can purchase for future use. it helped me when i was off sick for a year & suffered from complications & side effects of meds. use the disability insurance when you are actually going to be out sick for long period, over a couple of months or so. few days or weeks is not advisable or you use up your maximum. in my work in california... i am able to purchase extra day or two vacation each month to save up for future use too. see if your company has this option, no harm in asking your human resources. good luck.

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