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Best wishes Kirsten. I am sure we are not the only ones praying for a complete recovery. You deserve it!
I hope you can get better for the transplant!! I cannot imagine how frustrating this journey has been for you and your whole family. I am sure you will get the treatment you need !!!
Kathlyn Ferreira Xavier
You're in my prayers, kia kaha.
Wishing you all the best. Sending lots of love and positive thoughts your way <3
Asha & Harrahsyn
I wish you all the best Kirstin. I know you don't know me but I already see you as a close friend:).Let us know how things get on ok.
Kirstin has Scleroderma Systemic Sclerosis. We are trying to raise enough funds to send her to Australia so she can recieve a StemCell Transplant which will partcially reverse her autoimmune disease. With out this Transplant her body will eventually shut down and her organs will begin to fail. testing for transplant will start in 2013 and the cost is $48,000
Scleroderma affects the skin and internal organs. Kirstin's skin has become so tight that any movement is extremely painful. She is in constant pain and without this treatment her organs are at risk. There is no cure for SSS so this Transplant is our last hope.
A Short clip on what this disease has done to my beautiful sister.
Update for 18/02/2013
Big thanks to the herald for taking the time to write about my sister. While we were gone we had some great news.
As of next week Kirstin will begin the testing for the transplant. They will be putting her under to insert a line into her chest which can stay there for up to 10 yrs, this way it will make taking blood from Kirstin alot easier. They have being using seaweed on kirstins finger which has made a huge difference and also mixing a cream with steroids and using it on her rash which has also helped. Kirstins doing well and she has hope again that things are going to be fine. Still no smoking so I am very proud of her. I'm hopeful that with her major organs still unaffected she will past the tests with flying colours. This is the start to our journey to giving Kirstin a better quality of life. It's going to get much worse before it gets better but I'm so proud of her for fighting so hard, even after being knocked down time and time again she has some amazing strength and will power. This is it we have made it this far, and with the help of her friends and supporters we will give Kirstin back her quality of life.
The 21st of Dec 2012. Others will remember this day because the world was going to end. But for my family this day will be remembered as the start of a new chapter for Kirstin and Giving her a better Quality of life...
Her app with Dr Bart Baker went well and he was very caring and helpfull. For the first time in 5 yrs my sister and my parents felt happy leaving the doctors app and happy knowing that there was someone out there who really does care. He was honest, caring, and helpful. which is all we ever wanted from the start. They put it forward to Auckland to do the first ever transplant in NZ and they turned it down because of the risks. So in the next six weeks Dr Baker will work with his team and contact Dr Moore from Sydney to see if the Transplant can be performed in Palmerston north. I hated the idea of that hospital even touching my sister but Dr Baker has stated that he will not jump into this and if he feels that she could be at risk in anyway then he will not do it, And his team that will be working with her a wonderful people. He also said that Dr Moore will be working with them 100% from across the ditch.
He listened to Kirstin and wrote down every question they asked so that he could get it answered for them. He knows that because of the tightness of her skin it makes it impossible to get needles into her, The only place they can now get blood is from her groin which is very uncomfortable for her, so he has suggested they put some sort of line into her chest so they can take blood from there when needed. It stays in her chest untill after the transplant that way it makes taking blood from her a little kinder. Also he has told Kirstin he will look into getting some of eggs frozen. Because of the amount of Chemo she will have to recieve it slims down her chances of having children. This man thinks ahead and thinks about his patients which is more than i can say about any of those other so called specialists. I spoke with my sister tonight and for the first time in a whole year i could hear happiness in her voice i know it doesnt mean much to some but that right there was the best xmas present ever.
So in 6 weeks time we will know if this is going to go ahead and testing will begin. I'm very excited and can't wait to hear from them, I will keep you all up to date on her progress. Big thank you to everyone who has supported us, your support means the world to us and we will never be able to thank you enough.
Sorry there has been no updates I have been flat out with Kirstins facebook page and researching medications for her. Just a update of whats happening fro start to finish for those who havn't seen her page.
Kirstin was diagnosed 5 yrs ago with Scleroderma Systemic Sclerosis. An autoimmune disease which produces to much collagen in the body and then starts to attack the internal organs. The word Scleroderma is Greek for "tight skin". 2 yrs ago she noticed the tightening on her hands and since then it hasnt stopped. As of today she has lost the use of her fingers arms and now her legs are becoming so tight that even walking is very difficult. About 10 months ago i researched a drug called cellcept many sclero sufferers take it because it helps loosen the skin. But she was told no to the drug so i just assumed it was not available in NZ. I was wrong it was available just not given. Had my sister been given this drug at the start of the year she would still have the use of her fingers and arms.
Scleoderma patients suffer from poor blood flow and because of that Kirstin has ulcers all over her arms that will not heal. Last month Kirstin was finally given cellcept to use but she can not start them untill her ulcers are gone. I researched ulcers and found that Viagra was a very good drug to use as it restores the blood flow back to the wounds and would help them to heal. Again her specialist refused Viagra and said that it wasnt up to him as to what drugs he gave Kirstin. Apparantly some big-wig says she has to try all other meds first to see if they work. Ummmm in the last yr my sister has lost the use of her arms, fingers and now her legs i'm pretty sure your meds are not working. Scleroderma usually affects woman between the ages of 30-60, Kirstin's body is shutting down now at the age of 26, I really dont think the doctors have time to be playing the i dont know game. She finally has an app next tuesday to see the Haematologist about the transplant, Hopefully then will something be done about her ulcers and constant pain. I will make sure i keep regular updates on here so you can all follow our journey to Give Kirstin a better quality of life.