tag:blogger.com,1999:blog-4874275156466815993.post1019231803485236240..comments2022-11-30T20:46:30.121+05:30Comments on The Atypical HUS India Foundation: An accident of geography?Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-4874275156466815993.post-85681254311413942762016-11-11T12:12:41.890+05:302016-11-11T12:12:41.890+05:30I completely understand your pain. But I assure yo...I completely understand your pain. But I assure you, we are working on aHUS and new therapies in Indian context too. There are more complement blockers round the block, and shall be coming soon.<br /><br />Regards<br />Dr Sidharth Sethi<br />Consultant, Pediatric Nephrology<br />Medanta, The MedicityAnonymoushttps://www.blogger.com/profile/03806207678777937163noreply@blogger.comtag:blogger.com,1999:blog-4874275156466815993.post-26440101783822064602016-11-03T16:19:32.140+05:302016-11-03T16:19:32.140+05:30Hi,
I can really understand the pain as my son is ...Hi,<br />I can really understand the pain as my son is also one of the very few to get this Disease. <br /><br />Can you please provide you contact details as I need to discussion on Medication of Eculizumab. can you please provide your details<br /><br />Thanks+Regards,<br />S.D.Kulkarni<br />9620213275Anonymoushttps://www.blogger.com/profile/17938418942789694791noreply@blogger.comtag:blogger.com,1999:blog-4874275156466815993.post-28119650114205664662016-08-15T20:42:34.793+05:302016-08-15T20:42:34.793+05:30I have no words. We have to continue this fight, ...I have no words. We have to continue this fight, we have to find our words again, the thousands we have already written or uttered must be rewritten and uttered again until someone listens. Kamal, please inbox me the name of the newer drug company. Perhaps a campaign to their people on the importance of a drug for pediatric patients will do more good than out attempts to change Alexion's mind or to change the patent laws in your country? People may wonder at your statement, "Wouldn't it have been better to have a disease that had no cure?" They needn't wonder. You sit, you watch, people you love, people you care about deteriorate before your very eyes. Others have been transplanted and gone on to get better and better while governments and insurance companies play around with all their legal liabilities and bottom lines. It's heart wrenching. It the interim, people die, people loose their abilities and people's families are being torn apart.<br /><br /> Why watch children suffer and barely hang on to life only to finally get a transplant when so much of their life was lost, so much of their abilities lost, so many complicating factors prevent them from their living to their full potential? Last, all of us who have ever lost a child, (for any reason), know we would gladly take those long hours in the hospital room praying for another hour with our child, another day, no matter the expense, no matter our pain, no matter the work it requires, just to see another smile.Unknownhttps://www.blogger.com/profile/14713165371595242185noreply@blogger.com