"My disability can never stand as an obstacle in my life"40-years-old, Chitra, has a loco-motor disability. She has studied upto class 12th and has decent knowledge about computers and Tally. She managed to get a job in a local export company but could not continue due to her disability. Her husband, Ramamurthy works as a watchman and earns a salary of Rs. 6500. Everyday survival became a challenge for the family. However, Chitra found out about GLRA India and enrolled herself in a vocational training course in tailoring at GLRA India’s vocational Training Centre for Livelihood. She actively participated in SHGs meetings and focused on upskilling herself. Chitra is now able to earn Rs. 7000 per month through stitching and tailoring.

“My disability can never stand as an obstacle in my life” says Chitra. Chitra is a great example of strength and resilience, and now inspiring others with her story. She is equally contributing in fulfilling the needs of her family, and she is committed to provide the best education to her children.

The eighth-grade student Saptaparna, 14, lives with her family in the Malda District of West Bengal. She had been sick when she was three and had noticed that both of her legs were very swollen. She began receiving care at a nearby clinic, but her health showed no signs of recovery. Later, it was discovered that Saptaparna had lymphatic filariasis, also known as elephantiasis.

She was unable to play with her friends or go to school because of swelling legs. Elders and kids her age would frequently make fun of her illness, but Saptaparna explains, "I am more than my disease." In a morbidity camp in Malda District, her condition was first discovered. Her health has gotten better over time, and GLRA Health employees are now regularly providing home-based treatment. Additionally, Saptaparna sees to it that she practises good hygiene and gets timely treatment for her skin infections.

"Teenager chooses Hope over Fear"
Darshna, 15-year-old, stays with her mother and five siblings at Dhugni Village, Maharastra. Darshna’s mother is a sole breadwinner in the family.Due to prolonged illness, Poor Darshna was forced to drop out of school. Darshna’s condition hinted symptom of leprosy. (MB MDT). Her treatment began at a Primary Health Centre (PHC) in Dhugni village. However, the disease progressed as there was an appearance of clawed hands and patches on her skin. She was referred to Vimala Dermatologist Centre, an ally of GLRA India in Mumbai. She received routinely physiotherapy session at VDC, and underwent a major surgery for the correction of left wrist drop.

Darshna was depressed by the thought of not having family around, but sisters at VDC, counselled and supported her throughout her recovery. Darshna is back to school and now committed to motivating other people affected with leprosy.

Poonam, 22-year-old, stays with her aunt at a shanty slum of New Delhi. She had to drop out of school as she was diagnosed with MDR-TB. Poonam’s aunt, sole breadwinner, was unable to give timely care towards Poonam’s health. MDR-TB medicine would often cause unpleasant side-effects on Poonam’s body. Later, GLRA India staff enrolled and counseled her for treatment adherence. Poonam was well versed with her medicines, and ensured she took them on time. She started regaining her health. She actively participated in GLRA India’s patient-provider meetings and learned about various healthy hygiene practices. Poonam is MDR-TB free and now inspiring others. She is often seen facilitating TB awareness workshops. Poonam is committed to empowering people who are fighting their battle with MDR-TB.

"Sajitha, a 36 year old woman, born with a mild muscular dystrophy is defying disability with her exceptional talent and personality. Father's early departure and losing two brothers to disability; Sajitha and her mother were scarred for life.
With support of DSS Pattuvam - an ally of GLRA India in Kerala, Sajitha continued to pursue her passion for learning and making a difference.

Sajitha is an artist, an expert in stitching, designing ornament and budding women entrepreneur of Kannur District, Kerala. She has conducted several art shows around India, and recently bagged “Best Women Entrepreneur Award” by the Lions Clubs, for developing an environmentally friendly pen.

The eco-friendly paper seed pens can be grown into a papaya plant once they are used up. They contain seeds that can be later planted into the soil; not only that, the body of the pen is made out of recycled paper. This earthy pen is a great alternative to plastic ball points, and can be perfect for students and businesses that care for the environment.

“Disability can never stand in between me and my passion for creating a sustainable environment” said Sajitha. Proud member of the Disability People’s Organisation (DPO), Sajitha is committed to empower people with disabilities and help them in realizing their full potential.

Wheel bound Sajitha is now turning the tides and slowly getting recognition for her work. Sajitha is a great example of strength and resilience and her story makes us think differently about disability.

Sajitha is a sole breadwinner and making a living through sales of her eco-friendly pens in a local market with support of DSS Pattuvam, but we can do our bit in supporting the cause of protecting and caring for the environment.

Heeba is a 21 year old woman suffering from MDR TB. She recalls that she might have contracted tuberculosis from her maternal uncle when she had gone to visit him. After a few months of her marriage she found a boil in her back. Heeba took medicines from a quack, however there was no respite and she developed another one in her leg. Then, she visited a government hospital for a check-up where she was diagnosed with MDR TB. By this time, she had also conceived.

After learning about her disease, her husband and his family disowned her and forcibly left her at her parent’s house. She and her family requested and pleaded with the husband’s family to take her back, but they were not ready to listen to anything. It has been 8 months since she started the treatment. She has now given birth to a baby girl who is 3 months old. She sometimes fears that her baby does not get infected, hence she uses a mask to protect it. She receives a monthly nutrition level that can be maintained. To improve the economic condition of the family, her father has been supported by GLRA to start a small business of clothes in a weekly market in the locality. To improve air flow in her house, she has also been provided a pedestal fan under infection control practices.

Loss of parents and distributed childhood compelled Raju to run away from home when he was merely 8 years old. Since then he has been traveling and been with the truckers. Hence, he could not read or write.Today, he is a 30 year old man and is a truck driver. He earns a fixed monthly salary of Rs. 5,000. He usually drives on Delhi-Nepal route. Raju says that he was not keeping well for sometime & therefore visited hospitals for his illness where though he was diagnosed with TB, he kept getting referred to other hospitals for treatment initiation. By this time he was tired and frustrated to run after hospitals and stand in long queues. He then finally met a GLRA counselor in Sanjay Gandhi Transport Nagar through a peer educator of GLRA who runs a food eatery, who followed him up and he was put on DOTs after 3 months of being diagnosed with TB. Since he works in Sanjay Gandhi Transport Nagar, hence prefers to take the DOTs from office premises. He says, “Today, I feel better since I started taking the treatment”. When he has to go out of Delhi, he informs the counselor and carries medicines for the number of days he is away.

Nisha’s fight against leprosy Nisha (name changed), five years old village girl, had reddish skin patches over the legs and back of the thigh. She had no treatment history of leprosy earlier. A local doctor referred to K.P.C. Medical College, Jadavpur but her mother ignored the advice. One year later, the number of patches increased and one of her relatives advised them to take her to K.P.C. Medical College. After a complete physical examination on 6 January 2019, she was diagnosed with a new leprosy case and was referred to nearby leprosy hospital because she was only 5 years old and her weight was 17 Kgs. They gave her MB (child) treatment but her family refused to take medicine and returned to K.P.C. dermatology Clinic after two weeks. In the clinic, GLRA supervisor counselled her family and convinced them to take MDT and treated her with MB child doses as per the advice from the dermatology department at K.P.C. Medical College. GLRA supervisor followed up the cases through home visits and counselling as and when required over telephone. Nisha’s treatment was completed after 12 doses in December 2019. Now she is better and grateful for the timely treatment.

A brave girl Preeti from Telangana at the age of 14 has found few patches on her body until when she was studying in 9th standard. Later Consulted at Nizamabad Hospital, she was diagnosed with leprosy and was given MDT Child dose, but while taking medicine, her fingers started clawing . She was taken to a general physiotherapist, treated for about one month, but there was no improvement. Her parents took her for many treatments.

Later, she came to Sivananda Rehabilitation Home, Hyderabad. Preeti’s fingers were crippled & badly stiff by then and she had to be admitted. She has been kept on daily physiotherapy exercises besides splints support. Reconstructive surgeries are planned in which her crippled fingers will be back to normal. Preeti wants to continue her studies after the operation and dream of a bright future & live with dignity.

Moussumi Khatoon, a 15 year old girl, lives with her parents in Shibpur, Howrah, West Bengal. GLRA Team first met Moussumi in April 2020, when she was suffering from paraparesis caused by the spinal TB. Paraparesis immobilises only the legs of the affected patient while his/her arms can still move. Such patients frequently lose all sensation in their legs, and some become incontinent, which means they can no longer control their stool and urine. They pass stool and urine uncontrollably in their beds or clothes.

The spinal tuberculosis damages the bones of the spine due to which the channel inside the spine carrying nerves becomes blocked by bone chips and pus, both of which are produced by TB bacteria. This damage puts pressure on the nerve bundles, causing them to malfunction.

If TB destroys the middle dorsal spine, as in case of Moussumi, all nerves from the brain to the lower parts of the body are affected disabling the body function from the middle back to downwards. As a result, the patient is unable to move or feel his legs any further. This is a dire situation. When time passes, the nerves inside the spine are irreparably destroyed, and they will not heal even after surgery. The patient would be paralysed for the rest of his or her life, and we see many such tragic patients.

When Moussumi came to the TB-hospital, she could still move her legs a little. This gradual onset of paralysis is typical of the spinal TB. But Moussumi could no longer stand or walk, and she had lost control of her urination. On the day of her admission on April 8, 2021, she was put on TB medication with strict bed rest. She could not be operated right away because of the the Coronavirus pandemic in Kolkata. There was no doctor willing to operate Moussumi in a nursing home infected with Covid-19, and many nursing facilities had been directed by the government to treat Covid-19 patients.

Finally, one month after her admission in this TB hospital, a doctor was ready to operate on Moussumi. However, the cost of her operation was quite significant. Moussumi’s condition deteriorated during the month-long wait to find a doctor, and eventually she couldn't move her legs at all.

On May 11, 2021, Moussumi was operated at the Parc Clinic in Kolkata and is now recovering at St. Thomas Home. She can move her legs and attempts to walk, currently with the assistance a nurse. She is eager to fully recuperate and to walk again. Moussumi will need to undergo 18 months of antibiotic treatment for tuberculosis, although this does not have to be done in an indoor facility. She can be discharged for treatment at a local TB centre once she can walk on her own and climb a staircase again. She will get six months of medicine from the Government, and afterwards she will be medically assessed again. Her treatment would continue for further 12 months.

GLRA has generously funded her hospital stay at St. Thomas Home, including medication, bed expenses, and nurses. Only because of the invaluable support of GLRA this young lady will be able to walk on her own again and would not be restricted to the wheelchair.

Salma Khatoon is a 24 years old lady from a large urban slum called Pilkhana in Howrah, West Bengal. She is unmarried and lives with her parents.In the year 2019, Salma fell sick with tuberculosis (TB) of the spine, involving the upper three vertebrae of dorsal spine. She became paraparetic due to which she could not move or had any sensation in her legs. This happens due to nerve damage in the spinal column housing the nerves from the brain to various body parts and backwards.

If the spine of a human being is damaged due to pressure from the pus and bone chips produced by Tuberculosis, these nerves do not function anymore.

When we learned about Salma in July of 2019, she was bedridden already for one and a half months. This clearly indicated that she was already paraparetic (means, could not move the legs anymore), due to long delay in treatment. This would mean a much lower chance to recover after an operation of the spine and decompression of the nerves in its inner column. As a result, Salma had lost control over passing stool and urine (was incontinent), because the nerves coming down from the brain control the urinary bladder and the gut, too, which were damaged. Salma didn’t have any pain in the spine, that most patients with spine tuberculosis would experience.

In the tuberculosis hospital, she started the TB treatment immediately and had to be kept under the strict bedrest. Without any further delay, she was operated on July 29, 2019 by a surgeon in Ekbalpur Nursing Home, Kolkata. The damaged spine was bridged with a steel implant, that usually stays in the spine for rest of a patient’s life. Salma got all the services free including her operation where GLRA financed her medical treatment and hospital stay, including the salary of nurse who took care for Salma, and a different NGO financed the operation, that usually costs around Rs.80.000.

Salma recovered after the operation and was slowly able to move her legs until she was able to walk again. She was very happy about her recovery. After five months as inpatient treatment at St. Thomas Home, she was discharged but had to continue her anti TB treatment for many more months. Usually, we treat patients with tuberculosis of spine for 18 months, but Government gives free medicine only for six months. Salma was happy to get the medicines from GLRA to complete her treatment after 18 months.

Salma returned to us in August 2020, roughly one years after her first admission to St. Thomas Home. She was tetra paretic again, means, she again couldn’t move legs anymore, but this time, additionally, she couldn’t move her arms anymore, too. She didn’t have any feeling in the lower part of the body. In this episode, she was able to control stool and urine. Reason for her paralysis was a relapse of tuberculosis in the upper dorsal spine, around the steel implant. Patient was terrified about this second episode of paralysis.

Salma was operated once more on September 14, 2020, this time by Dr. K. K. Mukhopadhyay in Genesis nursing home, Kolkata. He removed the bone chips and pus which were sent for microscopic examination and culture of TB germs. This means, the germs in the fluid that has been removed during the operation were tested whether they show a resistance against important anti TB antibiotics. Unfortunately, such resistance of TB germs against important antibiotics is widespread in India and creates much more individual suffering. In Salma`s laboratory test, it was shown that the TB germ that created a problem the second time in her, was resistant against the most important antibiotics for TB germs, namely Isoniazid, Rifampicin and Ethambutol. We did not know whether this resistance against antibiotics had been there already in 2019, or whether resistance was created afterwards. Probably, there were few drug-resistant TB germs already there previously that broke through the immune system and created damage at the same position of Salma`s spine again.

After the operation, Salma recovered again after few weeks, and is now able to walk again. This time Salma gets other combination of antibiotics against TB than before. At present, she gets altogether six antibiotics for nine months. She is one of the few patients who got the new antibiotic drug against TB, Bedaquilin.

Salma is still in our hospital but would be discharged in the near future. She needs to complete her antibiotic treatment and shouldn’t miss even one single dose.

GLRA supported her complete treatment that has continued for many months. Salma has enjoyed all the services free and is now on the recovery path. We wish that TB never returns in her life.

Kainat Naaz is a 20 years old woman with a tuberculosis affecting the brain and the surrounding of the brain, which is called meninges. Kainat is under treatment in the indoor ward of St. Thomas Home for ten months now. When we got to know her, she was in a comatose state and didn’t respond to questions. She showed an unspecific reaction only when she was turned around in the bed. The mother informed us that additionally there was an unspecific reaction when the mother called her name. At this time, Kainat was unable to eat and was nourished with the help of a Ryle`s tube for many weeks. A Ryle’s tube is a plastic tube through that liquid food can be transported in the stomach of a person, who otherwise cannot eat.

The mother reported the history of this patient before her admission in St. Thomas Home to us: the patient became slowly and slowly weaker and weaker in a course of around six months and continuously and slowly lost her facility to speak and to eat. Finally, she became bedridden and unconscious. The diagnosis of tuberculosis was established late, and the treatment started when she was already in an advanced stage of the disease. On the day of admission, Kainat had fever and responded only slightly to questions. She followed simple commands of her mother but didn’t speak by herself. She had few spontaneous movements of her arms and legs but a spasticity in her limbs, especially on the right side. Her heart rate and her blood pressure were high. Her neck was rigid and didn’t allow the head to move easily. The patient had a bedsore presacral.

After some weeks of tuberculosis treatment, we noticed the first signs that Kainat understood a question and she turned her head adequately to communicate a “Yes” or a “No”. But she was often irritable and cried a lot. Later, she started to eat small amounts of food by herself. In the following months, Kainat slowly, slowly,woke up from her semi-conscious state and started to move the limbs on the left side, but not on the right side. She was able to eat with the left hand so that Ryle’s tube could be removed. She was often nervous and anxious, especially when the nurses gave the injection that the nurses gave her for two months.

At present, Kainat is still mostly in bed but can speak a few words now with a silent voice. She understands everything and shows her wishes, for example regarding the TV program, with gestures and a few words. She can eat with her left hand, but often food drops down. She is placed in a wheelchair on the sunny terrasse every day for some hours. After a long time of paralysis of the right limbs Kainat started to move the right limbs slightly with slow but steady improvements week by week. She has regular physiotherapy but doesn’t like it much and cries often when her limbs are moved. The patient is still not fully continent and still passes stool and urine in the bed or a diaper, but she informs her mother now immediately.

The mother of the patient has been hospitalized with her daughter in March 2022 and she has stayed with her in the hospital for the whole last 10 months. She has an important role in the improvement of her daughter. Although she has other children at home, she decided to stay with her sick daughter day and night. We cannot allow a family member to go home and return to us regularly due to the Coronavirus-related restrictions for visitors. Without hermother’s help, Kainat would not have improved so much.

The greatest for Kainat is when her father comes. At present, we allow visitors only on three days of a week, and Kainat cries on the days on that her father doesn’t come. When he is there, she is happy. Although not having good fine motoric function and not being able to speak sentences, she is, to our surprise, able to enter with her still weak hands the PIN number of the smart phone of her father and scroll his messages – a fine motor function that she doesn’t show otherwise in her day to day-life with us. Kainat notices everything on the ward, and although she isnot able to sit up without help, and not able to speak in full, she has an important word to say which TV program will run on this evening and which not. While she is often in a serious mood, sometimes, when a joke is made, she laughs, which makes us feel glad, too.

Kainat was a student of class 10 when tuberculosis ruined her health. She will probably not return to school anymore. But whenever we thought, this is now the maximum rehabilitation that we have given her, she surprises us in the following week with another slight step of improvement in her motoric function and speech. Her treatment will run for one more year, and she can stay with us for this time, if she and the family prefer that.

How to diagnose tuberculosis of the brain earlier in the course of the disease, when the damage is less profound? Tuberculosis of the brain is rare, and many doctors don’t consider this differential diagnosis, when a patient has such profound weakness. And it is not so easy to get a CT scan, or an MRI of the brain done when one must pay by oneself. We hope that our network with the local doctors of the slums will help patients with brain tuberculosis to get diagnosed and start their treatment earlier in the course of the disease, so that their lives are not so much ruined as the life of Kainat.

Chandrashekhar || 35 || Carpenter || Jaipur || Chandrashekar is married with 5 children, working as a carpenter in VKI area but due to sickness he left his job and was sitting idle at home. His wife then started working in a factory in the VKI area. During one to one communication in October 2022 one of our counselors Mr. Yogesh Kumar came in contact with his wife. After getting IEC information about Tuberculosis she told us that her husband has been having similar kinds of symptoms for a long time.

Our counselor went to his home and took a sputum sample for testing. Two days later his report came positive and he was diagnosed with pulmonary TB. As his situation was getting worse day by day, we took the initiative to start his treatment from the DOTS centre without any delay in October. Our counselor is in routine follow-up with him and monitoring his health. We expect him to fully recover in March 2023.