How long did it take you to get your diagnosis? If you're extremely lucky, this was given to you by the first doctor that you visited. Mine was a journey of about 13 years of wishing and hoping that whatever difference I was noticing in my body is something I would outgrow. I guess most people were hoping that they would too or their children would. Then the years passed and it was clear that there was no improvement, if anything, things were getting slower, more challenging and maybe even painful.
Often times the doctors or the medical preactitioners who give us the diagnosis have not dealt with MD before and only apply the knowledge they got from their books which they had in medical school, which I gather is not much for anyone without specific interest in this genetic condition. After the diagnosis has been delivered, I don't know about you but I went all crazy gathering as much information as I could about MD from my dear friend Google. The first few interactions with this friend felt as though a sentence was being read and it all spelt doom! Then I took to my other good friend Facebook, she was more comforting as I met and made friends who soon turned into second family. These friends were in groups for persons with muscular dystrophy and parents of children with MD. Their experiences in a world with http://en.wikipedia.org/wiki/Newborn_screening and more advanced healthcare systems gave me hope that it isn't over yet. I have done several rounds in hospitals where I mentioned muscular dystrophy and was met with raised eyebrows by qualified and experienced practitioners who thought the condition only existed in the medical books.
You're maybe wondering about the camp, when I first heard about the camp, I immediately thought of those families with members who have muscular dystrophy and other rare conditions and neuro-muscular conditions who have read more about their conditions online ( This information is not always so reliable) who could benefit from meeting specialists who have years of experience in dealing with their conditions.
This December, Association of persons with Dwarfism https://www.facebook.com/pages/The-Association-of-People-with-Dwarfism-Kenya/505307476230907?ref=br_tf has organised for a team of doctors from John Hopkins Hospital in the US together with a team from Kenya to hole medical camps in the country specifically targeting persons with disabilities. So far the medical camps have been planned to take place in three towns in the country and this has been highly dependent on the support from the hospitals in those regions. On 29th December, the camp will be in Murang'a , 31st December, in Eldoret and 2nd January in Nairobi at Mama Lucy Hospital in Kayole. Among the team of doctors are muscle specialists from University of Texas medical centre, Children's hospital of Eastern Ontario, Canada among others who have experience dealing with Muscular dystrophy.
Get your medical records and concerns together and plan to be there! Pass the word around.
Often times the doctors or the medical preactitioners who give us the diagnosis have not dealt with MD before and only apply the knowledge they got from their books which they had in medical school, which I gather is not much for anyone without specific interest in this genetic condition. After the diagnosis has been delivered, I don't know about you but I went all crazy gathering as much information as I could about MD from my dear friend Google. The first few interactions with this friend felt as though a sentence was being read and it all spelt doom! Then I took to my other good friend Facebook, she was more comforting as I met and made friends who soon turned into second family. These friends were in groups for persons with muscular dystrophy and parents of children with MD. Their experiences in a world with http://en.wikipedia.org/wiki/Newborn_screening and more advanced healthcare systems gave me hope that it isn't over yet. I have done several rounds in hospitals where I mentioned muscular dystrophy and was met with raised eyebrows by qualified and experienced practitioners who thought the condition only existed in the medical books.
You're maybe wondering about the camp, when I first heard about the camp, I immediately thought of those families with members who have muscular dystrophy and other rare conditions and neuro-muscular conditions who have read more about their conditions online ( This information is not always so reliable) who could benefit from meeting specialists who have years of experience in dealing with their conditions.
This December, Association of persons with Dwarfism https://www.facebook.com/pages/The-Association-of-People-with-Dwarfism-Kenya/505307476230907?ref=br_tf has organised for a team of doctors from John Hopkins Hospital in the US together with a team from Kenya to hole medical camps in the country specifically targeting persons with disabilities. So far the medical camps have been planned to take place in three towns in the country and this has been highly dependent on the support from the hospitals in those regions. On 29th December, the camp will be in Murang'a , 31st December, in Eldoret and 2nd January in Nairobi at Mama Lucy Hospital in Kayole. Among the team of doctors are muscle specialists from University of Texas medical centre, Children's hospital of Eastern Ontario, Canada among others who have experience dealing with Muscular dystrophy.
Get your medical records and concerns together and plan to be there! Pass the word around.
The schools established with the blessings of Bhagwan Sri Sathya Sai Baba provides education to rural children absolutely free of cost. You should take a glance at our other initiatives as well.
ReplyDeletemadhusudan naidu muddenahalli
madhusudan naidu l.
It is important that we serve our rural children with a nutritious breakfast before enlightening their minds with academic as well as human values education.
ReplyDeletemadhusudan naidu
madhusudan naidu muddenahalli
This has been the primary aim of Sri Sathya Annapoorna Trust. Sneak through our website to have a glimpse of our Annapoorna Breakfast Programme.
ReplyDeletemadhusudan naidu
madhusudan naidu muddenahalli
madhusudan naidu
madhusudan naidu muddenahalli