Comments for RARE Project http://rareproject.org RARE disease awareness, support, advocacy, & research Tue, 21 Feb 2012 17:33:19 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Patient Stories of Hope and Inspiration – Get Involved! Share Your Story! by Heather Earley http://rareproject.org/2011/11/28/patient-stories-of-hope-and-inspiration-get-involved-share-your-story-2/#comment-1058 Heather Earley Tue, 21 Feb 2012 17:33:19 +0000 http://RAREproject.org/blog/?p=5344#comment-1058 Sharing your experience is so important to the community - kudos to you for allowing others to see your bravery. Thank you! Sharing your experience is so important to the community – kudos to you for allowing others to see your bravery. Thank you!

]]> Comment on Patient Stories of Hope and Inspiration – Get Involved! Share Your Story! by Heather Earley http://rareproject.org/2011/11/28/patient-stories-of-hope-and-inspiration-get-involved-share-your-story-2/#comment-1057 Heather Earley Tue, 21 Feb 2012 17:28:12 +0000 http://RAREproject.org/blog/?p=5344#comment-1057 Hi Sandra. First, hugs to you - I am so glad you felt comfortable sharing your story with us. Have you seen our recent MSA story published in our Patient Stories of Hope and Inspiration? http://rareproject.org/2012/02/15/paolas-life-with-multiple-system-atrophy-msa/ Your voice is an integral part of raising awareness .... thank you for speaking out about MSA. We are thinking of you. Hi Sandra. First, hugs to you – I am so glad you felt comfortable sharing your story with us. Have you seen our recent MSA story published in our Patient Stories of Hope and Inspiration? http://rareproject.org/2012/02/15/paolas-life-with-multiple-system-atrophy-msa/ Your voice is an integral part of raising awareness …. thank you for speaking out about MSA. We are thinking of you.

]]> Comment on Patient Stories of Hope and Inspiration – Get Involved! Share Your Story! by Sandra Schefano http://rareproject.org/2011/11/28/patient-stories-of-hope-and-inspiration-get-involved-share-your-story-2/#comment-1055 Sandra Schefano Tue, 21 Feb 2012 15:39:23 +0000 http://RAREproject.org/blog/?p=5344#comment-1055 I was dx with multiple System Atrophy in August of 09. I am fighting this disease every day.It has taken away the life i once had. now i am mostly bedridden, have to have help to get up from sitting or from lying down. have to scoot on my bottom to get down the stairs and crawl up the stairs. sometimes i feel like i am on this journey alone. Many have turn their backs on me since i became aflected with this nigtmare of a disease. Need a stair lift chair but cannot find an orgination to help me obtain one. I was dx with multiple System Atrophy in August of 09. I am
fighting this disease every day.It has taken away the life i once had. now i am mostly bedridden, have to have help to get up from sitting or from lying down. have to scoot on my bottom to get down the stairs and crawl up the stairs. sometimes i feel like i am on this journey alone. Many have turn their backs on me since i became aflected with this nigtmare of a disease. Need a stair lift chair but cannot find an orgination to help me obtain one.

]]> Comment on Lady Gaga and WRDD – Call to Action! by Heather Earley http://rareproject.org/2012/02/16/lady-gaga-and-wrdd-call-to-action/#comment-1025 Heather Earley Sun, 19 Feb 2012 22:48:46 +0000 http://rareproject.org/?p=7255#comment-1025 Tiffney - we are so happy to hear of Meghan's transplant success! Although we have not yet heard from Lady Gaga's 'Born This Way Foundation' about their support of our organization for World Rare Disease Day, her message speaks volumes to so many of us with rare disease. You stated it perfectly, "born this way, born to fight, born to show the world her uniqueness". Your daughter is an inspiration! Tiffney – we are so happy to hear of Meghan’s transplant success! Although we have not yet heard from Lady Gaga’s ‘Born This Way Foundation’ about their support of our organization for World Rare Disease Day, her message speaks volumes to so many of us with rare disease. You stated it perfectly, “born this way, born to fight, born to show the world her uniqueness”. Your daughter is an inspiration!

]]> Comment on PATIENT STORIES OF HOPE AND INSPIRATION by Mary Boitz http://rareproject.org/2012/02/13/patient-stories-of-hope-and-inspiration-8/#comment-1015 Mary Boitz Sun, 19 Feb 2012 16:57:25 +0000 http://rareproject.org/?p=7043#comment-1015 Amanda - I recognise this because we've been through it. Our son James was born with ABCA3 surfactant deficiency (like you, we'd never heard of it before his diagnosis). James' start in life sounds very similar to Brayden. He was taken into ICU 4 hours after birth with breathing difficulties and went onto the ventilator the next day. He stayed on the ventilator for the next 4 weeks and at one point was DNR and within minutes (literally) of dying - the hospital staff had switched off the monitors and given him to me to hold. BUT the hospital we were in had put out an international all for any doctors who had had any ABCA3 cases to advise them of anything that had helped. Great Ormond Street in London advised them to try a mixture of a big dose of steroids (prednisolone) and hydroxychloriquine. For James, it got him off the ventilator and breathing air - something we were told was impossible at the start. I know of another baby who had heard about James who told their doctors and again was given the same treatment and has gone home. We were told, like you, that the only treatment was a lung transplant - but that James could only be considered for one at the age of 18 months to 2, depending on how big he was. At that point we couldn't se him ever reaching that age, but he turned 2 over the New Year and is showing no symptoms of the ABCA3. We know it's still there and that the future is still very shakey, but the older he gets, the better his chances of a successful transplant. Please tell your doctors about James and ask them to contact Dr Bush in the UK. Maybe Brayden can be helped in the same way. Praying for you all - we know how this feels and how difficult it is. Amanda – I recognise this because we’ve been through it. Our son James was born with ABCA3 surfactant deficiency (like you, we’d never heard of it before his diagnosis). James’ start in life sounds very similar to Brayden. He was taken into ICU 4 hours after birth with breathing difficulties and went onto the ventilator the next day. He stayed on the ventilator for the next 4 weeks and at one point was DNR and within minutes (literally) of dying – the hospital staff had switched off the monitors and given him to me to hold. BUT the hospital we were in had put out an international all for any doctors who had had any ABCA3 cases to advise them of anything that had helped. Great Ormond Street in London advised them to try a mixture of a big dose of steroids (prednisolone) and hydroxychloriquine. For James, it got him off the ventilator and breathing air – something we were told was impossible at the start. I know of another baby who had heard about James who told their doctors and again was given the same treatment and has gone home.

We were told, like you, that the only treatment was a lung transplant – but that James could only be considered for one at the age of 18 months to 2, depending on how big he was. At that point we couldn’t se him ever reaching that age, but he turned 2 over the New Year and is showing no symptoms of the ABCA3. We know it’s still there and that the future is still very shakey, but the older he gets, the better his chances of a successful transplant. Please tell your doctors about James and ask them to contact Dr Bush in the UK. Maybe Brayden can be helped in the same way. Praying for you all – we know how this feels and how difficult it is.

]]> Comment on RARE DISEASE – The Fight to be on top by Heather Earley http://rareproject.org/2012/02/17/rare-disease-the-fight-to-be-on-top/#comment-1001 Heather Earley Sat, 18 Feb 2012 20:39:44 +0000 http://rareproject.org/?p=7360#comment-1001 Thank you so much Ellen! I truly appreciate your kindness. Hugs! Thank you so much Ellen! I truly appreciate your kindness. Hugs!

]]> Comment on RARE DISEASE – The Fight to be on top by Heather Earley http://rareproject.org/2012/02/17/rare-disease-the-fight-to-be-on-top/#comment-1000 Heather Earley Sat, 18 Feb 2012 20:38:54 +0000 http://rareproject.org/?p=7360#comment-1000 Chris, you are too kind. I think you are the amazing one!! You have been an absolute Godsend to the organization. Your hard work and dedication has been immeasurable! Hugs! Chris, you are too kind. I think you are the amazing one!! You have been an absolute Godsend to the organization. Your hard work and dedication has been immeasurable! Hugs!

]]> Comment on RARE DISEASE – The Fight to be on top by Chris Hempel http://rareproject.org/2012/02/17/rare-disease-the-fight-to-be-on-top/#comment-998 Chris Hempel Sat, 18 Feb 2012 19:07:07 +0000 http://rareproject.org/?p=7360#comment-998 You are amazing Heather!!! I feel the same way as you about donating my time. It amazes me how many people have rare diseases and don't even understand that have them or what it means to find treatments and cures for them. I have met so many people through Global Genes and RARE Project over the past four years -- it's helped me maintain my sanity! You are amazing Heather!!! I feel the same way as you about donating my time. It amazes me how many people have rare diseases and don’t even understand that have them or what it means to find treatments and cures for them.

I have met so many people through Global Genes and RARE Project over the past four years — it’s helped me maintain my sanity!

]]> Comment on RARE DISEASE – The Fight to be on top by Ellen Crompton http://rareproject.org/2012/02/17/rare-disease-the-fight-to-be-on-top/#comment-997 Ellen Crompton Sat, 18 Feb 2012 18:35:49 +0000 http://rareproject.org/?p=7360#comment-997 Sending healing thoughts and wishes. Sending healing thoughts and wishes.

]]> Comment on Patient Stories of Hope and Inspiration – Get Involved! Share Your Story! by juano ocampo http://rareproject.org/2011/11/28/patient-stories-of-hope-and-inspiration-get-involved-share-your-story-2/#comment-992 juano ocampo Sat, 18 Feb 2012 07:04:56 +0000 http://RAREproject.org/blog/?p=5344#comment-992 My name is Juano Ocampo and I am a 2 time brain cancer survivor I just wanted to share my own experience of my battles with cancer at such a young age, the first time I was diagnosed with cancer I was 18 years old and it came back when I was 19 underwent major surgeries and further biopsy tests as well as intense chemo therapy and radiation, and also stem cell collection and lastly bone marrow transplant. Facing brain tumor twice was no doubt the hardest thing I've ever fought in my life but I realized if I just stay strong everyday and always believe that there's something greater than the trials I'm facing I will win, so I took the pain and held strong with God by my side along with family and friends I felt the true meaning of life and learned how to be strong and live life and believe that nothing is impossible that anything you wanna do in this world you can do it. My name is Juano Ocampo and I am a 2 time brain cancer survivor I just wanted to share my own experience of my battles with cancer at such a young age, the first time I was diagnosed with cancer I was 18 years old and it came back when I was 19 underwent major surgeries and further biopsy tests as well as intense chemo therapy and radiation, and also stem cell collection and lastly bone marrow transplant. Facing brain tumor twice was no doubt the hardest thing I’ve ever fought in my life but I realized if I just stay strong everyday and always believe that there’s something greater than the trials I’m facing I will win, so I took the pain and held strong with God by my side along with family and friends I felt the true meaning of life and learned how to be strong and live life and believe that nothing is impossible that anything you wanna do in this world you can do it.

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