We, a whatsapp group of Muscular Dystrophy patients sent letters to Ministry of Health and Family Welfare, to
include Limb Girdle Muscular Dystrophy (LGMD) in the national policy of
treating rarest diseases. And it was nice to receive back a letter from Ministry
of Health and Family Welfare, and we tore open the envelope eagerly expecting a
bit of positivity as replay, but it quite disappointing and their replay was a
letter that you read below.
My father wrote the letter in
English (he, the ret. govt. officer had dealt with many official letters) but they still want a letter in English or Hindi! I actually thought
they couldn’t read my father’s handwriting and was thinking to send it again typed
in ms-word. But I wasn’t the one received like this but everyone written to
them received the same replay exactly except the name and address. I wonder how
they could do this exactly to everyone without even taking a glance, but reading
and writing our addresses correctly. Huh
Is this happens with every letter
sent to centre government from Tamil Nadu? Or their mind-set is registered that
any letter from Tamil Nadu will be only in Tamil. Yep, I know that couldn’t be the right reason
to complain but resenting everyone’s letter (without a valid reason) doesn’t
make any sense. Though I understand that 100+ members of our whatsapp group
(and many other groups of muscular dystrophy patients around India) sending
letters to the ministry doesn’t make great changes but we tried to push a coin
instead waiting for thing to happen on own or never.
The main reason to include the
Muscular Dystrophy in the national policy of treating rarest diseases is to get
some special benefits that were denied for this kind of multiple disabilities.
Generally genetic diseases like these don’t cover under insurance but if it given
the status of rarest disease; we could get a health insurance worth about 15
lakh if any medicines or treatment found in the future. I also applied for the
UDID (Unique Disability Identity Card) card based on the existing disability
certificate obtained from the state government. Glad they didn’t made demand the disabled people
to appear in person to register for the UDID card and they are content with the
information’s available.
