HI, my name is Clarissa and i am 16 years old. I began having symptoms (such as bleeding and tiredness) November last year and am in the process of being diagnosed however it is becoming apparent that I have chronic ITP. However all of the hospital appointments and days that I am just to tired ( due to low platelet levels, this is something that affects me rather a lot) to go to school are severely affecting my education. I am currently doing As levels (year 12) and I am really worried that i will fail my exams. The Main issue is that I get home from school and then sleep until tea and then sleep some more! My treatment is not at the pint where they can find a permanent/effective cure/treatment and so I don't know how much more of this i will have!
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Clarissa - I don't have an easy answer for you. I can sure relate to a degree and all I can tell you is that the only thing that can get you through is determination and will.
I wasn't going to school when ITP was at it's worst, but I was working full time as a paralegal and raising 3 active kids. I went from 6:30 am to 11:00 pm every week day. Exhaustion didn't even describe how I felt. I worked when counts were down and I worked during treatments. I just told myself that stopping wasn't an option (it really wasn't in my situation).
Since ITP can be chronic, you can either choose to keep going or not keep going. Life goes on whether you do or not....it won't wait for you. If you can get through the weeks, you can rest as much as possible on the weekends. I still live life counting down the week days and on Friday's after work I plop on the couch and am SO happy that I did it again!
There are no magic answers or options here. You can only do your best. Maybe your school has temporary home schooling? Maybe that is possible. My daughter had that when she had mono. This school year is nearly over, so hang in there!
What treatments have you tried? ITP isn't chronic until after 6 to 12 months. Also, remissions can happen at any time, no matter how long you've had it. There is always hope!
Have you tried asking the school/college about what they can do to help? I recently got into contact with the school about my 13 year old because ITP treatment may mean that he misses a fair bit of school over the next few months and their Learning Support Centre was really helpful.
Clarissa talk with your school about your situation, they may be able to offer extra tuition to catch up if you are missing too many lessons or offer advice on how to proceed with exams. My daughter Niamh is in a similar situation ...she is 18 in the last year of school and hopes to be at university in September. She has a conditional offer at the Uni of her choice if she can make the grades. Her platelet count is under 10 and counts have been on the floor for the past few months. she tried Rituximab, it didn't work for her but has worked for others. Your Haematologist would also be able to write a letter to explain your medical situation, Niamh's Haemo offered this when Niamh had a university interview and tests last December.Niamh didn't take up the offer but it was good to know it was there.Niamh's school have been very helpful organising notes and extra tuition during the holidays.
Niamh also goes to bed early at 10pm and often has a nap after school. She has to plan social outings to factor in tiredness but she is finding it manageable.Looks like you are taking the opportunities to rest when you can which is good. Niamh has said yesterday that she is happy to continue as things are unless there is a treatment on offer that promises a cure or long term remission or she has active bleeding.It is early days for you Clarissa so things could improve or you could go into remission.
With my daughters condition she has an IEP plan or a 504 plan would work for you. This 504 plan would limit how much homework you would have to do and your tests would be easier because you have a medical condition. It's something your mom needs to look into with your guidance counselor it's really helped my daughter.
hey I'm still in the same vote even though my platelets are okay right now we still dont know if I need the spline removal if you need anything dont ever hesistate to contact me though email at email@example.com
My son Aaron is in 11th grade and had a reoccurrence of ITP. He has missed a tremendous amount of days and I was fortunate and had his 504 plan reinstated (from his first bout). In this 504 plan, they put in that he has the option to opt out of tests if he feels unfocused and has extra time to get his missed homework done. If it affects you so much every day, it can be put in your 504 plan extended time for homework. 504 is modeled around what your symptoms and needs will be to ensure you continue doing well in school. 504 plan can follow you to college. I recently received a letter stating something about Aaron's college testing like SAT and ACT, etc. and he has accommodations during those times as well. I had the school nurse totally on my side and does a wonderful job informing the counselors, etc. about the seriousness of Aaron's condition. Good luck.
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