Disability for itp: I have itp and had... - ITP Support Assoc...

ITP Support Association

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Disability for itp

Nenegurl profile image
5 Replies

I have itp and had my spline remove because of it and now my joints are so painful dose anyone know anything about it. I work for an elm. School and I'm always sick ...and in pain .., help

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Nenegurl profile image
Nenegurl
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5 Replies
Ltinny profile image
Ltinny

Nenegurl, I still have my spleen, but I have lupus. Because I am on immunosuppressive therapy, my doctor told me that I should either file for disability or work from home, because being in an office I was catching everything that went around and was very sick all the time. I would try for disability, or find some work that you could do at home. But, yes you are open to infections especially in an elementary school. Hope that helps.

NickyD profile image
NickyD

I had my spleen removed several years ago. I do not have any pain, but I work from home to keep the chance of getting infections to a minimum. I do not mix in large groups of people and stay well away from anyone with a cold or a cough. Ltinny is right, you will pick up anything going.

trinag profile image
trinag

Hi i have recently been retired due to ill health as a direct result of my itp. I'm only 32. I was working in the area of social services were I would have been at risk of assault. I now am working from home as a milliner total contrast to what was doing and I love my new life.

My advice would be to start look at alternatives that you could do at home. There are Web based school programmes for kids that are unable to attend mainstream education. In Ireland we have notschool.com. There possibly could be opportunities in something like that.

Best of luck there is nothing worse than been in continuous pain.

Jessi0421 profile image
Jessi0421

I too teach in an elementary school. I teach 2nd grade and pick up everything! I'm constantly sick and chronically fatigued. Worst of all, my platelets plummet every year when I return from summer break. I'm currently on weekly injections of NPlate and have been for the past 3+ years but my platelets are currently at 18,000.

I've tried EVERY treatment out there, including a splenectomy, so NPlate is pretty much my last resort. I pray daily it continues to work, albeit slight at the moment.

Last week I was on recess duty and was hit by a soccer ball and it stung but didn't think much of it at the time. That is until I noticed two very painful bulging veins on my hip/outer thigh where I was struck. After icing it and sitting for a bit, the swelling went down but I now have a giant black and blue bruise the size of my hand!

Of course I immediately called my hematologist's office to ask their advice and was seen by them that afternoon. I was so terrified by something that seemed so silly but for those of us with ITP, even little events such as this can be potentially dangerous.

I've also thought about taking early retirement but I feel trapped by my need for good health insurance and my retirement investment but I just don't know if I can last another 16-18 years for that day to come!

Feel like I'm stuck!

bige54 profile image
bige54

I'm not sure if you were actually referring to US federal disability in your subject, but just in case you were, you might be interested in this. I recently went on disability and during my application process was totally surprised to determine that on their list of illnesses that result in just about automatic approval, ITP is on that list. Basically, if you have ITP, and have had at least one bleeding incident in the past year, you cannot be denied disability. I hope this helps, Also, btw, I had my spleen taken out in May. Knock on wood, my platelet counts have been in the normal range since, but I also want to state that my doctor did not tell me to avoid anything. I have no done anything different since May, and I don't plan on changing. Among other things, I am season ticket holder to a profession Ice Hockey team and plan on attending my full course of 40 or so games with 10,000-15,000 other hockey nuts. Of course, common sense tells you don't stand right in front of someone who is constantly sneezing, but I don't plan on letting my ITP, or any treatment for it, to tell me how to live my life. As I am a recent cancer survivor as well, I feel the same way about that. Good luck to you and I hope you find whatever help you need.

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