Muscular dystrophy heroes stress the need for access to affordable healthcare

Mithila Beheray cannot comfort her threeyearold daughter when she falls ldquoI have never picked her uprdquo says the 35yearold Nagpur residentThatrsquos been the hardest part Not needing assistance to climb the stairs when she was at dentistry college at 16 being the last one to get to class and the last one out Not progressing from having a peculiar gait to finding it hard to stand up from a squatting or sitting position to progressing to a walker and a wheelchair Not taking two years to learn to retie her hairMuscular dystrophy is a moving target ldquoWhile I work on readapting one muscle group to do a functional task differentlyrdquo says Beheray ldquosomething else starts failing My disease progressed very slowly until after my delivery three years ago Then COVID19 happened and I could not find a physiotherapist to come home Now I have to use my muscles strategically I canrsquot overtire them Thatrsquos why I use a wheelchairrdquoMithila Beheray was diagnosed with the Limbgirdle type 2B Muscular Dystrophy at 16 but it progressed rapidly after the birth of her threeyearold daughter TaraMuscular dystrophy is a progressive genetic disorder with no cure and leads to the gradual weakness and loss of muscle mass There are no supplementary therapies nothing to prevent reverse or repair it ldquoUnder the broader category fall 35 subtypesrdquo says Dr Arun Shastry Chief Scientific Officer at DART Dystrophy Annihilation Research Trust ldquoThese are named mostly by the organs they affect The most deadly is Duchenne Muscular Dystrophy or DMD It largely affects only boys usually at the age of two years by the time they are seven to nine the skeletal muscle is hit and they are wheelchair bound By their early 20s they pass away due to respiratory or cardiac arrestrdquoTherersquos a reason for the directness and urgency of the scientistrsquos message Most funding for research into the disease comes from parent groups Just like DART which was established 10 years ago in Bengaluru by Ravdeep Singh Anand and Movin Anand whose son Karamveer was diagnosed with DMD in 2004 While stem cell therapy has been explored itrsquos not with much success ldquoCells are made of DNArdquo explains Shastry ldquoIf the basic software has a bug not much can be donerdquo A ray of hope though is gene therapy in which the gene is repaired or edited This is in the trial stage like the Antisense Oligonucleotides based Exon Skipping therapy that DART hopes to start trials for in its nine centres It focuses on gene repair by correcting the mutation using their novel drugCurrently the therapy is available to patients only in the US at a hefty R5 crore per annum per child if all goes as per DARTrsquos plan it could cost Rs 25 lakh a year in India That is if trials are initiated and completed The infrastructure of which will need R135 crore for 18 months of trials involving 54 patientsDr Arun Shastry Chief Scientific Officer Dystrophy Annihilation Research Trust DARTldquoOver the past 10 yearsrdquo says Shastri ldquoParents of Indian children with MD have contributed to research and develop medical advancements For the current project we have received some grants from the government raised some through crowd sourcing and need around R107 crore morerdquoldquoMay God spare even the enemyrsquos children from this disease I am not able to save my children I donrsquot want to live anymorerdquo read Sanjeev Mishrarsquos suicide note as reported by a national daily on January 28 2023 The former BJP corporatorrsquos two sonsmdashaged seven and 13mdashsuffered from Duchenne MD The whole family including Mishrarsquos wife died by suicideBeheray suffers from the Limbgirdle type 2B strain LGMD2B and was diagnosed in 2006 when she was 16 Her daughter Tara is a carrier ldquoI had a peculiar waddling gait which my mother noticedrdquo she says Beheray was sent to see neurologist Dr Satish Khadilkar with whom she keeps in touch till dateldquoIt was hard for me to accept it especially when my friends were doing all the things teenagers dordquo she says ldquoMy mother pushed me to do physiotherapy every day she wouldnrsquot let me wallow in selfpity or depressionrdquo A spinal injury put Beherayrsquos husband Aditya also in a wheelchair When she found herself getting angry for no reason after the birth of her child Beheray took herself to the therapistrsquos couch ldquoI was ridden with guiltrdquo she says ldquoMy husband and I wondered if we had done the right thing by bringing a child into the world Whether we are able to do justice to herrdquo The therapist assured her that this was all in her head ldquoHe told me I would do more for herrdquo she says ldquoAnd Tara is an amazingly sensitive child Her nanny helps me dress and if shersquos not around Tara has asked me whether she can help me lift my legs Shersquoll ask me lsquoMumma are you happy Mumma are you sadrsquo You donrsquot expect this kind of sensitivity from a toddlerrdquoBeheray now focuses on staying as independent for as long as she can She focuses on using her muscles wisely and functionally ldquoI canrsquot wear them out since they donrsquot regeneraterdquo she says ldquoI focus on tasks like being able to put on my makeup or doing my buttons and hooks I lost a lot of upper body strength after Tara was bornrdquoSonali Gupta moved to India for the support her homes in New Jersey and New York could not give her The daughter of physicians with roots in Faridabad and Rishikesh the USborn Indian chooses to live in Bandra to be able to get and afford the help of her 24hour livein companion Martha Tirki her driver and Man Friday Srikrishna lsquoBalursquo Lugade and even simple conveniences such as the readiness and ease of carpenters who will make a portable twoinch step designed by her which she can use to break down the sixinch steps most commercial establishments have making restaurants and bars more accessible to her The journalism student dedicated her words and voice to activism around MD writing about it and making podcastsThe now 36yearold was diagnosed in 200708 when she was an undergrad in her senior year and came to India with her father to explore supplementary therapies such as Ayurveda and stem cell therapy ldquoWe found that both my parents have the unexpressed generdquo says the now Bandra ldquolocalrdquo She also has the limbgirdle strain that leads to degeneration of the hip and pelvic girdle ldquoI had started falling down easily which I just put down to clumsinessrdquo she says of the symptoms that lead to the diagnosis ldquoI had trouble climbing the stairs at the subway and noticed that I couldnrsquot raise my arms over my head I was about 2021 then but looking back I had started compensating for muscular weakness two to three years prior unknowinglyrdquoWhile she could Gupta pursued an active life interning with a record label then enrolling to study entertainment law so that she could continue in the music industry Parallely Gupta and the family explored Ayurveda for a year in 2008 in Pune stem cell therapy in Chembur in 201112 and living in Florida for 10 months in 2015 ldquoThough Florida due to its senior citizen population had more accessible infrastructure it was very isolatingrdquo she says ldquoCaregivers in New Jersey are hard to find and expensive I had come to Mumbai before and the vibe felt like home So I moved here in 2016rdquoSince then Gupta has been stoically ambulatory She does adaptive yoga swimming and pilates Shersquos part of many communitiesmdashpersonal and professionalmdashand she does not refuse an invitation to be social unless it compromises er health ldquoI rely on a cane and carry my portable steprdquo she says Balu has been with me since 2011rdquo says Gupta ldquoHe understands how my body moves and Im lucky to have both his and Marthas support to go wherever I desire Mumbai needs to create more accessible spaces I used to be okay with getting carried up in a chair but now I find that process dehumanizing and humiliatingShe serves as assistant producer in a podcast company hangs at Soho House Juhu and hopes to rejoin singing and keyboard classesGupta has elevated the height of her bed dining chair and sofa just as Beheray has including the WC to be able to rise easily ldquoJust this conveniencerdquo she says ldquoof being able to get a carpenter to customise or alter things around the home readily and economically makes India easier to live inrdquo