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New Member

  • josborne@pei.sympatico.ca
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13 years 8 months ago #21552 by josborne@pei.sympatico.ca
New Member was created by josborne@pei.sympatico.ca
Hi! My name is Jo and I am a new member. This is the first time I have been part of the discussion group section. I was diagnosed with ITP 9 months ago and it was a terrifying roller coaster in the beginning. I am doing better now that I have a sense of what to look for and what to do but at times it still is unnerving. I am from a small province in Canada and the number of ITP cases are low so therefore I don't have a lot of support or the latest information. This is so exciting for me and I hope to connect with some of you in the near future. Jo
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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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13 years 8 months ago - 13 years 8 months ago #21557 by Sandi
Replied by Sandi on topic Re: New Member
Welcome, Jo! Glad you became a part of the group! B)
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13 years 8 months ago #21572 by CindyL
Replied by CindyL on topic Re: New Member
Welcome, fellow Canadian! Let me guess, PEI? I'm just a hop skip and a jump from you; in NB.

Sorry you had to find us, but you've come to the best place to get advice; support and friendship. If you have any questions, don't hesitate to ask, you'll get all kinds of responses. What, if any, treatments have you tried?
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13 years 8 months ago #21584 by Dean
Replied by Dean on topic Re: New Member
Welcome!! Glad you found this wonderful group!!
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13 years 8 months ago #21615 by josborne@pei.sympatico.ca
Replied by josborne@pei.sympatico.ca on topic Re: New Member
Hi Sandi, thanks for your warm welcome to the group. I am really looking forward to sharing information and getting to know people. I discovered the group in April when I first got sick but made a lot of contact by phone. I think I just really needed to hear a voice and talk to someone to try and make sense of what was happening. It has been a lot of work but things right now seem to be going a bit better. It is so nice to connet with others who have the illness, the isolatio was certainly difficult in the beginning.
Thanks again
Jo
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13 years 8 months ago #21619 by josborne@pei.sympatico.ca
Replied by josborne@pei.sympatico.ca on topic Re: New Member
Hi Cindi, It is so great to see another fellow Canadian for sure and you are right I am here in PEI so we are certainly neighbours. I have wanted many times to become part of this group since I got sick and glad that I finally got the courage to do it.
At the end of March I discovered small bruises on my legs. That same week I had a broken blood vessel in my eye and my eye turned completely red, black and blue. I thought this was very strange and at the end of the same week I woke up with a massive bruise on my upper leg, I knew something was wrong. It was a scary process from there and I ended up in emerg and my platelets were 6 - I had no clue about platelets. I was put on prednisone 70 mg, seen by the Internist and kept in hospital for 3 days. Platlets went to 30 and they let me out. But the platelets went to 50 then back down to 30 - and all over the place. I did not have any idea of what was happening or what to expect. I found the medical world did not give much information. I was on steroids for about 7 months and then was slowly taken off of them. I have been doing a lot of other alternative things so that has really helped me I think because my platets began to really drop when coming off the steroids. The doctors talked about splenectomy or danazol. I did not agree with splenectomy and so far have managed to maintain things with all of the other things I have been doing with food, supplements, energy work and lots of rest certainly in the beginning. The platelet disorder group was a wealth of information and fortunately for myself I had environmental illness in the past so the diet and things that affect platelet counts were similar. So I am holding my own right now and platelets are at 66 that is the highest they have been in long while.
Thanks so much for asking and look forward to getting to know you and others in the group and sharing information. Nice to start feeling connected.
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13 years 8 months ago #21638 by josborne@pei.sympatico.ca
Replied by josborne@pei.sympatico.ca on topic Re: New Member
Hi Dean thanks for your nice welcome, I look forward to chatting and getting to know people who are also dealing with this illness.
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13 years 8 months ago #21653 by meredithjane
Replied by meredithjane on topic Re: New Member
Hi Jo,
Welcome to our ITP family forum! The knowledge, support & encouragement here is excellent.
Best wishes from Down Under,
mj
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13 years 8 months ago #21654 by Ann
Replied by Ann on topic Re: New Member
And welcome too from the UK. I think we all feel a bit isolated as it's a rare disorder, but the internet is a wonderful invention that can bring us all together.
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13 years 8 months ago #21742 by josborne@pei.sympatico.ca
Replied by josborne@pei.sympatico.ca on topic Re: New Member
Wow! I was so surprised to connect with someone from Down Under, it is so great that there is this forum for people with this illness to share information and support. Amazing when you can be feeling isolated and then suddenly you realize you are not alone at all.
Thanks for taking the time to welcome me to the group. I have enjoyed reading what people have had to post and talk about. I look forward to being involved in this group.
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13 years 8 months ago #21743 by josborne@pei.sympatico.ca
Replied by josborne@pei.sympatico.ca on topic Re: New Member
Thanks so