Comments for Sickle Cell Disease Advocates of Minnesota http://www.scdam.org SCDAM: Sickle Cell Advocacy: Let's Do this Sat, 04 Feb 2012 09:12:04 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on How Sickle Cell Disease Affects the Developing Brain by Dickens Owino Ogony http://www.scdam.org/how-sickle-cell-disease-affects-the-developing-brain/comment-page-1#comment-329 Dickens Owino Ogony Sat, 04 Feb 2012 09:12:04 +0000 http://www.scdam.org/?p=446#comment-329 I have a son who has been diagnosed with SCD at 11 months. How can I be of help to him? I have a son who has been diagnosed with SCD at 11 months. How can I be of help to him?

]]> Comment on Welcome to the SCDAM Website by Nancy Vanderburg http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-328 Nancy Vanderburg Tue, 31 Jan 2012 17:51:41 +0000 http://www.scdam.org/?p=28#comment-328 At an open house I met a woman from Ghana who is here is the USA for schooling. She has twins (three years old, I think) and the boy child has SCD. She told me she had never talked with another parent of a child with SCD. Is there someone in your group who would be interested in at least emailing her and providing some support. I know it would be difficult because her situation is so different with her child not being here and not having access to medications and only has emergency care a distance from the grandmother (who is caring for the children now). Here is what she emailed me, “Thanks so much for the wonderful time you shared with me and our educative conversations. I really enjoyed talking with you. I'm so grateful for everything. I was really tired of trying to connect myself with the internet on this issues because they always refer me to see a doctor with my child. That is the main reason I want to network with somebody personal who is leaving with it or having a child like that. Since, I came in August, I've searched and combed the internet but have almost the same answers. As you know, I don't have my child here. Very frustrating.” Do you know of any family in your group who could relate to her? At an open house I met a woman from Ghana who is here is the USA for schooling. She has twins (three years old, I think) and the boy child has SCD. She told me she had never talked with another parent of a child with SCD. Is there someone in your group who would be interested in at least emailing her and providing some support. I know it would be difficult because her situation is so different with her child not being here and not having access to medications and only has emergency care a distance from the grandmother (who is caring for the children now).

Here is what she emailed me, “Thanks so much for the wonderful time you shared with me and our educative conversations. I really enjoyed talking with you. I’m so grateful for everything. I was really tired of trying to connect myself with the internet on this issues because they always refer me to see a doctor with my child. That is the main reason I want to network with somebody personal who is leaving with it or having a child like that. Since, I came in August, I’ve searched and combed the internet but have almost the same answers. As you know, I don’t have my child here. Very frustrating.”

Do you know of any family in your group who could relate to her?

]]> Comment on Individual Education Plan or 504 Plan for Children with Sickle Cell Disease: Modifications and Accommodations to consider by Daryll Wilcher Jr. http://www.scdam.org/individual-education-plan-plan/comment-page-1#comment-326 Daryll Wilcher Jr. Wed, 28 Dec 2011 02:57:59 +0000 http://www.scdam.org/?p=69#comment-326 Those are good suggestions but sometimes there's no exceptions for having the pain meds that u need. Those are good suggestions but sometimes there’s no exceptions for having the pain meds that u need.

]]> Comment on Low Incidence Disease Specialist for Department of Education by Linda http://www.scdam.org/low-incidence-disease-specialist-for-department-of-education/comment-page-1#comment-325 Linda Fri, 16 Dec 2011 03:14:50 +0000 http://www.scdam.org/?p=486#comment-325 That sounds great! Is there a link to the copy of the fact sheet? That sounds great! Is there a link to the copy of the fact sheet?

]]> Comment on Welcome to the SCDAM Website by Linda http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-324 Linda Fri, 16 Dec 2011 03:09:27 +0000 http://www.scdam.org/?p=28#comment-324 I am so happy to see this website up. Are there any events organized by your organization to raise awareness of SCD in the twin cities? I would love more information about this if you have it. Thanks! I am so happy to see this website up. Are there any events organized by your organization to raise awareness of SCD in the twin cities? I would love more information about this if you have it. Thanks!

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