Comments on: Who after me?? The Unspoken Dilemma of Rare Diseases https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/?utm_source=rss&utm_medium=rss&utm_campaign=who-after-me-the-unspoken-dilemma-of-rare-diseases Rare Disease Advocate, Co-founder & Director - ORDI Wed, 14 Feb 2024 13:02:52 +0000 hourly 1 https://wordpress.org/?v=6.9.4 By: Santosh Kumar https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-525 Wed, 14 Feb 2024 13:02:52 +0000 https://prasannashirol.com/?p=5164#comment-525 Make organisation and make FD deposit on parents name and present name did FD deposit will manage patients capital expensive make caretaker organisation make policy for rare diseases make a special interest rate for disable people on FD deposit

]]> By: Santosh Kumar https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-524 Wed, 14 Feb 2024 12:27:37 +0000 https://prasannashirol.com/?p=5164#comment-524 I’m cerebral plasy I am suffering from last 30 years

]]> By: prasanna https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-458 Wed, 10 Jan 2024 01:24:54 +0000 https://prasannashirol.com/?p=5164#comment-458 In reply to Rashmi Sampath.

This is thought is of millions of mothers and fathers specially when child crosses the age of 12-15 and difficult to manage without mothers. I also lived with this thougth for more than 18 years.

]]> By: prasanna https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-457 Wed, 10 Jan 2024 01:22:29 +0000 https://prasannashirol.com/?p=5164#comment-457 In reply to Jalpa.

Hi, Thank you. Is it possble to share the link of such Home stay to get Idea as we are now thinking on certain models and get some idea.

]]> By: Jalpa https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-456 Tue, 09 Jan 2024 17:03:40 +0000 https://prasannashirol.com/?p=5164#comment-456 In US they are coming up with ideas of homestay for all such patients who can get medical attention and PT along with companion of other patients… I seriously feel it will be a great opportunity to give required independence and dignity to patients.. worth thinking

]]> By: Rashmi Sampath https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-455 Tue, 09 Jan 2024 15:30:48 +0000 https://prasannashirol.com/?p=5164#comment-455 Dear all,
I am Rashmi Sampath , mother of a SMA type 2 girl child who is 13 years. SMA is a rare cribbing disease which eats away physical abilities of the affected one. My daughter used to walk with little support until 9 years, now she is wheel chair bound , if the wheel chair has a repair, her world is literally stopped . Similarly, if I am not there , it would be very difficult for her to carry on her day to day activities. Every time a question ❓❓ arises, what after me. Same thought I had shared with Mr. Madan Gopal Sir few months back. Literally, we need to think of this seriously.

]]> By: Rashmi Sampath https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-454 Tue, 09 Jan 2024 13:46:00 +0000 https://prasannashirol.com/?p=5164#comment-454 Dear all,
I shared this same thought to Madan Gopal Sir few months ago, I have a child with SMA type 2 who is a girl. When I ponder over who after me? I am blank. Each day the problem is different,Sometimes physical sometimes physiological .
Many of them would have faced this issue from long years, generation to generations would have changed. How they faced in the previous times?Did they have a solution to this? If they had ,we could have better one? But I don’t know what? Please do help.

]]> By: Dr Sirimavo Nair https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-453 Tue, 09 Jan 2024 13:17:29 +0000 https://prasannashirol.com/?p=5164#comment-453 Well conceptualized and aligned thoughts to points!!

Maintaining the Spirit n tempo!!!

]]> By: Dr Sarvamangala shirol https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-452 Tue, 09 Jan 2024 09:02:11 +0000 https://prasannashirol.com/?p=5164#comment-452 As these are rare diseases, common people cannot manage them properly, because of there changing health issues so I think it’s better ,that some criteria should be framed by government that all multi-speciality hospitals should make a separate wing in the form of orphnage
and they should look after rare disease patients

]]> By: Poornima A C https://prasannashirol.com/blog/who-after-me-the-unspoken-dilemma-of-rare-diseases/#comment-451 Tue, 09 Jan 2024 08:59:40 +0000 https://prasannashirol.com/?p=5164#comment-451 You are a hero for many rare disorder kids and their parents. This topic is most required one. Is it possible to get CSR findings for this cause, then you can help many families through your organisation.

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