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TOPIC: Someone talk

Why Me??! 8 years 5 months ago #22282

  • Maddiexo
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has anyone ever wonder why us have to get this disorder? I'm Maddie and 16 years old and about a month ago I got diagnosis with ITP had all the symptoms of it and had only two thousand platelets! I first started taking prednisone at 80 mg didnt do anything and I had all the side effects of that medication: like headache, craving for food and all that junk. Recently I started the drug ritux its a chemo drug... and it can take up 12 weeks to make my platelets settle thing is.. my platelets are always so weird like one day it will be 25,000 on a blood test then we gotta go again and it will be down to like 7000 and the bad thing with this ritux it makes me really sick... My Valentines day gift was spending it in the hospital getting a IVIG and the day after..so I wish I knew more people who could help me out with how I feel. I'm up to talk with anyone soo write back and I'll get back with you as soon as i can.

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Re: Why Me??! 8 years 5 months ago #22290

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Maddi:

There are not many teens on the Forum. I'm an adult with ITP.

ITP can be an unpleasant disorder, but it's not the worst thing that can happen. You just have to remind yourself that things could be worse. There are a lot of people with ITP - adults, teens and children, even some babies.

I always thought "Why not me?" Bad things happen to good people all the time. It isn't fair, but that's the way life is. The good thing about ITP is that it is managable for the most part and most people can achieve a remission.

Rituxan isn't really chemo - it's immunotherapy which means it only targets certain cells (B cells), not all cells like true chemo does. You won't lose your hair or have the typical chemo side effects which is good!

Counts do go up and down a lot with ITP and hopefully, your counts will respond to Rituxan and you'll start living a normal life again. I have my fingers crossed for you!
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Re: Why Me??! 8 years 4 months ago #23643

  • clarissa.miriam
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Maddie,
I am also 16 and have also been diagnosed with ITP.My platelet levels go down to around 2000
Like you I am having IVIG treatments but they are only to temporarily boost my platelet levels,they also make me feel terrible :/ but i am going to Plymouth nuclear medicine dept. in a couple of weeks to see if the can find out what is destroying my platelets...

I know exactly how you feel hun. I remember thinking why had i got this so young? why cant it just go away?? But, in the end I thought that what happens happens and you've got to make the best of what you've got. Now I focus on the things that make me happy in life, like my friends and family:) Of course I look after myself but I make sure that I'm enjoying life. I've definitely found that having my friends around me and supporting me helps a lot. It's good to look at the positives in you life and (within reason)try and not to let ITP control your life.

I hope this helps hun, message me if you want to talk more.
:)
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Re: Why Me??! 8 years 1 month ago #26099

  • Hdavis619
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I think that all the time I was diagnosed 2 years ago I've had 11 ivig treatment retux whinrow and steroids and I've gotten all the side effects with it I missed most of my senior year of high school I spent christmas easter and thanksgiving in the hospital I'm scedualed to start chemo in a couple weeks and another ivig treatment next week so I know how you feel I've been, there I hated missing out on so much but when you still have time for it to chang it's not considered cronic till about 6 to 12 months after diagnosed and it dos get better when you figure out specific things that happen when your counts low and your not alone ik it feels as if your drownding and and theres a, million people there to help and you just cant seem to grab ahold but just stay strong things will start to look up

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Why Me??! 6 years 9 months ago #37560

  • gracie22
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I wonder that to.im 11 years old and I always wonder that. It makes me sad.

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Why Me??! 6 years 9 months ago #37621

  • HollYwood21
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I am right there with you Maddie. And to all who feel the same. I'm 19 now and I've had itp or have known I've had itp since I was 7. Though I've been lucky enough that I haven't had a treatment or any complications in a few years *knock on wood*, but I always worry that my luck will soon run out. I look back now and it does make me sad that I missed out on a some things because of having itp, but I try to look at it in a learning aspect now. I'm in college studying to be a nurse and going to the hospital all these years have kind of helped lol But I too do have those moments where I think "Why me?" and "Do I really deserve this?" But unfortunately, we're stuck with it until our bodies decide otherwise. Just keep a positive attitude and know that you will get through whatever life throws at you :)

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Why Me??! 6 years 7 months ago #38613

  • gracie22
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will it ever go away, people always ask me,do u still have that thing in your life :( .I really would like to talk to someone on here.please talk to me .

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Why Me??! 6 years 7 months ago #38623

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Gracie:

There is a good chance that you will have a remission. You might have to keep treating until you find a treatment that will give you a remission, such as Rituxan.

Even if it doesn't go away, many people learn to live normal lives despite ITP and can achieve many great things. You don't have to give up your dreams, but you may have to alter them a bit. Try to focus on the positive things in your life, like your family and friends, and do things that make you happy. Have fun. Don't let ITP get you and don't let it take over your life. You can control your attitude and having a good attitude can make a huge difference.

You are not alone. You can come here and talk any time!

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Why Me??! 6 years 6 months ago #39330

  • esmeraldaaac
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Maddiexo wrote: Hola Maddie! me llamo Esmeralda tengo 16 años y tengo ITP desde los 9, la verdad Siempre me preguntó, Porque yo tengo esta enfermedad? y siempre empiezo a llorar, tengo un poco de depresión porque se que no me curare, y es horrible porque no se sabe casi nada de esta enfermedad.
Cuando tenía 9, estaba de vacaciones con mi familia. Estando ahí, me empezó a salir mucha sangre por la nariz, mi familia pensó que ya sabes, era normal. Media hora después, volví a sangrar por la nariz, no de detenía! Tenía media hora sangrandome la nariz! Me llevaron al hospital, me revisaron, traía petequias y moretones, muchísimos en verdad, me pusieron algo en la nariz para detener el sangrado, me hicieron una prueba de sangre, a las 2 de la mañana, el doctor me dijo que tenía PTI, mis plaquetas estaban en 20000! Mi familia rápidamente se vino a la ciudad donde yo era, me llevaron al hospital, me hicieron otra prueba de sangre estaban en 2000! Me internaron, me dieron Prednisona en grandes cantidades, subi 15 kilos! Mi cara estaba como una luna llena! Tenía acné, y sólo tenía 9 años! Me prohibieron hacer muchas actividades porque me podría pegar, sabes que tan difícil es para una niña de 9 años no hacer actividades como los otros niños?...Al paso de los años sufri 4 recaídas, la más fuerte fue hace 8 meses, yo pensaba ya sabes que andaba en mis días, pero traía muchas petequias, y con solo pasarme el dedo en la rodilla ya traía un moretón muy grande, me llevaron al hospital mis plaquetas estaban en 20000, me internaron me controlaron y salí a los tres días, a la semana fui con mi hematologa a ser una prueba de sangre, traía 29000, en lo que cabe estaba bien, me dijieron que la Inmunoglobulina haría que mis plaquetas no se destruyeran en un tiempo, me volvieron a internar, me pusieron el medicamento, no funciono, fue tiempo perdido, no podía hacer actividades, nada. Mis plaquetas se mantienen en 40000-50000 y pues esta bien, pero es muy difícil.
Te preocupas apenas vez las petequias y los moretones, tu familia te dice que estas bien, pero tu sabes que no
Sólo hay que cuidarse

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Why Me??! 6 years 3 months ago #40930

  • Nameya
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Im Nameya… Im 14 years old and I have had ITP since 2007.. Its hard to confess about it to everyone.
When I was in Grade 1 we specifically asked my teacher to just keep it a secret until I was ready and Matured to tell my friends about my Chronic ITP but unfortunately she told the whole class, from that day till 2013 I was bullied about my scars and bruises that were on my legs and still are. I always wanted to change my body in that way to remove the scars and the petechiae on my chest. I was so insecure.. I often had mood swings and appeared depressed quite often, i started to become a hand full for my family and my friends because of this. I wanted to be left alone and i came of lets say b*tchy towards them and i lost most of my friends… I hate this disorder and i often feel.. "WHY ME?? What did i do to deserve this its not fair"
But now i have learned to live with it.. There is someone very special and close to my heart that i can relate to about my situation since he suffers from a similar chronic disorder..
Im not saying everything happens for a reason but I can say that ITP has been depression, a blessing and a lesson…
Thanks,
Nameya

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Someone talk 1 year 5 months ago #65798

  • Alicia22
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Hi guys, I am 15 and I was diagnosed with ITP over 4 months ago. Its been a hard rollercoaster during this time. Ive been on Prednisolone every time I start bleeding somewhere new but it doesnt work as well as it used to- my platelets haven't been above 10 for 4 months. Ive tried ivig and that didn't work. The doctors want me to try 2 days of ivig with Prednisolone. I then want to try the n plate when I turn 16. This is a tough ride, and I would love if someone could please talk to me about this stuff as it would be nice to know I am not alone.

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Re: Why Me??! 11 months 2 weeks ago #67340

  • Alicia22
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Hey! How are you going? I was diagnosed about this time last year with ITP, and in April it was found that I had multiple subdural haematomas (bleeding between the brain and skull). I then went into emergency surgery to have my spleen removed and has cured my ITP.

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Re: Why Me??! 11 months 2 weeks ago #67359

  • maria3132
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HI Alicia,
I'm an adult whose son had ITP (now seems to be in remission), but still check in occasionally and provide support if I can, as a very small way to give back to the community that carried me through when I needed it.
I just read both your posts, and I'm sorry no one had responded - the teen section seems quiet. How scary to have had these subdural haematomas. I am so so glad to hear your splenectomy has worked! I hope you never have to deal with ITP again. I have an uncle who had a splenectomy back in the 1950s, and it did completely cure his ITP. Take care!

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Why Me??! 3 months 2 days ago #69073

  • teenwithitp02
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I have often wondered the same thing. I get frustrated with my counts and how they never go up. I'm glad I'm not the only one who feels this way. Though I struggle to see the bright sides sometimes, I'm trying to stay positive.

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Why Me??! 3 months 2 days ago #69075

  • Alicia22
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Good on you. Keep trying to stay positive! I know exactly what it feels like to be let down by the counts. Make sure you keep doing the things you like doing! I know it might be hard to do now, but even take up a new hobby or instrument- it gave me purpose and satisfaction, also to make me feel a bit more human because everyone treated me as though I was sick which I didn't like. I am here for you. Sending my best wishes :)

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Why Me??! 3 months 2 days ago #69076

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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teenwithitp02
I have often wondered the same thing
What have you often wondered?

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Why Me??! 3 months 1 day ago #69087

  • teenwithitp02
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I meant I wonder why this happens to us. Why all of a sudden our body decides to attack our platelets. It is something that deeply puzzles me and often keeps me up at night, but I know there's nothing I can really do to change it other than wait and see.

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Why Me??! 3 months 1 day ago #69091

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Unfortunately a lot of people develop auto immune conditions and the cause is never discovered. Very frustrating I know.

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Why Me??! 3 months 1 day ago #69093

  • teenwithitp02
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In my family, it's not a surprise that I ended up with an autoimmune disorder, my mom and sister both have Hashimoto's, an autoimmune disorder that can cause hypothyroidism. I just happened to end up with ITP, but I think that it may have been a vaccine that started my decrease in levels, but I posted about that in another topic.

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Why Me??! 2 months 3 weeks ago #69123

  • MelA
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I know a young man - diagnosed with cancer at the age of 19 [20?] - he never asked why, he said he felt "why not me"?

I am the only one in my immediate family with anything autoimmune [and I have more than 1 autoimmune disorder], ITP and Graves Disease to name 2 - my sisters should appreciate me because if it weren't for me they probably would be the ones getting all these "wonderful" medical issues. There is nothing that will make my issues go away so I don't dwell on the why because it does no good. I prefer to enjoy life and hopefully in the process help others to enjoy it too.

Life isn't easy - in fact a lot of times it is the pits - life becomes what we make it!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Why Me??! 2 months 3 weeks ago #69132

  • teenwithitp02
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I guess I haven't been seeing it from that point of view.

I know a lot of my friends and people I meet have no idea what ITP is, but I can use my condition to raise awareness and help others. Well, as soon as I'm allowed to leave my house again. I'm trying not to think too much about what has happened in the past, but instead, go into the future with an open mind and heart.
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Why Me??! 2 months 3 weeks ago #69134

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Good attitude teenwithitp02. You cannot change the past.

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Why Me??! 2 months 3 weeks ago #69144

  • MelA
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Teen - you are a very mature, intelligent person! Hang in there - your parents must be very proud of you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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