Multidisciplinary Clinical Care – February 14 & 15, 2014
MD care is the only alternative management which has been a means of solace of the DMD children and the families. The sessions of MD care began with the first one being conduced in February. Due to the large number of children the group was divided into 2 where few of them attended the session on February 14 and the rest on February 15.
Subsequent to the MD care which was held on February 14, 2014, one more MD care was conducted on February 15, 2014. Here again a set of 11 patients including both ambulant and non-ambulant were present. The day started as always with a series of diagnostic tests followed by consultation with various specialties. It was a very special day as one of our patients’ was amidst us to celebrate his birthday with other children. It was a moment of great joy for the child and other children also to be a part of the event. The parents, even though had a tough time waiting all day with the children, had a smile on their face at the end of the day feeling contented with the care shown by each member of the MDCRC team which is a source of great strength to the team.
Doctors Training on March 3, 2014
Public Health Care doctors attended a training session at MDCRC, Coimbatore . The doctors were highlighted on the screening and identification of the disorder and they attended the MD care session throughout the day whereby other clinicians experienced in DMD care shared their views and practically examined few children who attended the care session. The session continued with talks given by Dr. Nandakuamar, pediatric neurologist, Dr. N oorul Amin Shahid, physiatrist, Dr. Ventaka Das, orthopedist and Dr. Vani, pulmonolgist. The participants were given a pre and post questionnaire to be filled which was evaluated. It was brought to light that most of them were not aware of this lethal disease before and had benefitted from the training. Dr. BR Lakshmi, director, MDCRC gave an overall view of the disorder and how important it was to manage when there is no cure documented until date.
Mountains of our Destiny – Photography Exhibition – April 29, 2014
Mr. J. Ramanan, a trustee of MDCRC had organized a photography exhibition at Contemplate Art gallery, Avinashi Road, Coimbatore. The net proceeds of the sales was donated to rehabilitate the children affected with Duchenne Muscular Dystrophy. It was inaugurated on April 29, 2014 at 5 pm by lighting the lamp by Dr. P.R. Krishnakumarji, Chairman, AVP, Coimbatore and Mr. A. J. Vincent, Chairman, Jennys Club, Coimbatore. It showcased glimpses of the Southern Western Ghats and the Himalaya. The event was made more interesting with documentary shows on nature, wildlife, and mountaineering on every afternoon exclusively for the children. Each day was special with lighting of the lamp by different chief guests from different works of life like Mrs. Vanitha Mohan, MD, Siruthuli, Dr. K.C. Ramaswamy, Chairman, Kurinji Hospital, Coimbatore, Mrs. Latha, IAS, Corporation Commissioner, Rotarian Mr. Kuriachan, MD, Kings Living Style, Coimbatore and Mrs, Mohanasundari, MD, Sharp Industries, Coimbatore who came to grace the occasion. Our sincere thanks to Mr. J. Ramanan who sold his pictures for the first time to raise funds for MDCRC.Also, our gratitude to all the people who made their contributions towards helping MDCRC to serve better to the DMD children.
Genetic Counseling on May 3, 2014
Carrier Genetic Counseling(GC) was held in Manmangalam, Karur on May 3, 2014. About 17 families were called for GC from both Nammakal andKarur. Carrier counselingwas offered in group and individual based on their family pedigree. Good feedback was got from each family where they said that the awareness regarding the prevention of DMD wasvery informative and useful. The inheritance pattern of the disorder and the importance of carrier testing is more useful in preventing this disorder in future generation.
Multidisciplinary Clinical Care – May 5, 2014
In May another round of MD care was conducted for the DMD children. It was like any other session with great care taken to bring the specialty doctors together to consult the children under one roof. All the doctors, like neurologist, pulmonologist, cardiologist, pediatrician, orthopedist, physiatarist, and physiotherapist evaluated the child and reports were documented for the pro gress of the child.
Genetic Counseling on May 8, 2014
Counseling for carrier and proband MLPA positive cases was held in MDCRC, Coimbatore. During the morning session, carrier counseling was called for and fixed for 6 families. Also, the patient’smaternal auntshad given sample for carrier analysis. During the afternoon session, GC continued for families from Karur, Namakkal and Coimbatore. Encouraging feedback was received at the end of the session from the parents who felt the session was very informative for their future generations.
Mothers’ Day Celebrations – May 11, 2014
For all that we are, we owe to our mothers. On mothers’ day, MDCRC honors mothers of the Duchenne children. To make this occasion special, MDCRC organized mothers’ day celebrations at Arya Vaidya Pharmacy, Coimbatore. As part of this event, a session on “Refreshing the spirits” was conducted by Mr. Mohan, ASHA Counseling and Training Services, Coimbatore. It helped the mothers to re-invent and rejuvenate themselves. Forty mothers of DMD children attended the function which was filled with fun and activities.
Following this, we felicitated mothers of DMD children. Dr. B. R. Lakshmi, Director, MDCRC welcomed the gathering. Padmashree Dr. P. R. Krishnakumar, Managing Director, Arya Vaidya Pharmacy, chief patron of the event, paid rich tributes to the mothers of DMD children. Mr. Marabin Mainthan Muthiah, Editor, Namadhu Nambikkai, guest of honour, praised the mothers for the dedication, commitment, love and care they shower on these unfortunate children. The most scintillating moment was the presence and talk delivered by Sri Balarishi Viswashirasini, Sri Viswashirasini Balapeedam, Coimbatore, who was also the chief guest. She spoke on the compassion, patience and selflessness of the mothers and blessed the gathering. In a brief feedback, mothers appreciated the gesture of MDCRC in organizing this program. The mothers were honored with two issues of Namathu Nambikkai magazine (April and May 2014) and Mr. Muthiah offered to give a year-long subscription free for the mothers.
Multidisciplinary Clinical Care – August 23, 2014
Another set of multidisciplinary clinical care session was held on August 23, 20114. It was like any other MD care session followed by a very interesting episode of story telling by a professional story teller. The children get highly enthused and thrilled with the stories and is a great moment of joy for the kids. Each MD care is a success with the help which is rendered by the volunteers who spare the time for the DMD children.
Model Rehabilitation Centre Inauguration at MDCRC – Nov 15, 2014
The Model Rehabilitation Centre was inaugurated by untying the ribbon by the Chief guest – Commissioner of Police. The centre hosts complete physiotherapy equipment which would benefit the Duchenne children. After the purchase of the vehicle shortly, the children from various parts of the city will be commuted to the centre for physiotherapy said Dr. BR Lakshmi, the director of MDCRC.
The keynote address was delivered by the commissioner of police who shared his thoughts that each of us have some disability which could be physical, mental or emotional. He stressed on the need for the people with various resources to come forward to make the life of the children affected with Duchenne better. This was followed by Dr. K. Ramaswamy, Vice chancellor of TNAU who emphasized the need for good mind and health which is the greatest wealth one could possess. And this can be acquired through physical well being. Dr. BR Lakshmi, the director of MDCRC emphasized on the need for integrated rehabilitation services for the children affected with Duchenne. She highlighted the integrated approach based on Ayurveda, yoga and physiotherapy. In continuation with this, Dr. Noorul Amin Shahid added an elaborate note on the importance of rehabilitation for these children. Dr. KC Ramaswami, the chairman of Kurinji Hospital, Coimbatore highlighted the services rendered by MDCRC which is indispensable.
Mr. Shankar, the yoga master at MDCRC, who is a very dynamic personality added that yoga could do wonders and miracles for all ailments and spread a ray of hope that Duchenne would see some light in the days to come with yoga. Few parents shared their views about MDCRC and its services towards the children which rendered excellent confidence to their family and children of which everything was free of cost they said.
After the dignitaries descended down the Dias, commissioner of police took special interest to meet the children affected with Duchenne who were curiously waiting to meet him. Special mention was made regarding issuing the disability card in the presence of the DDRO and the physiatrist, Dr. Noorul Amin Shahid, for the children who did not possess one until date. With lots of good wishes, encouraging thoughts and words, the program ended with a commitment to start camp at the earliest to offer the best services possible to the children affected with Duchenne at the model rehabilitation centre.
World Duchenne Awareness Day – Sep 07, 2014
On 7th of September 2014 the First World Duchenne Awareness Day was observed at MDCRC. Duchenne Parent Organisations and foundations working for Duchenne around the World had organized activities to raise awareness on this neglected, orphan disease and build a better future for all children, boys and young men affected by Duchenne Muscular Dystrophy (DMD). In the context of India, prevention of this disorder plays a crucial role. 7th of September was chosen as the dystrophin gene, the gene who is faulty in DMD has 79 exons.
MDCRC had organized a rally which was conducted at 6:30 am on September 7, 2014 from collector bungalow, race course, Coimbatore. Around 140 student volunteers from Krishnammal college for Women participated in the rally in order to create an awareness program amidst the common people in the city. Apart from the student volunteers, few clinicians and Rotarians also participated. The rally was flagged off by collector madam, Mrs. Archana Patnaik, IAS, who motivated the student volunteers to participate more in the awareness programs.
The Coimbatore District Collector, Mrs. Archana Patnaik, IAS hoisted the national flag followed by Dr. KC Ramaswami, Chairman, Kurinji Hospital, Coimbatore, who hoisted the Duchenne flag. The children with all their prayers let beautiful balloons fly up into the sky to reach the divine. Dr. Krishnakumarji, Chairman, Arya Vaidya Pharmacy let the balloons into the sky.
With prayer song and lighting of the sacred lamp, Dr. Radha Palaniswamy delivered the welcome address. The lamp was lit by all the delegates. On this occasion, MDCRC had relaunched its website which was inaugurated by Dr. PR Krishnakumarji, the Managing Director, Arya Vaidya VPharmacy, Coimbatore who is also a board of trustee at MDCRC. He also addressed the gathering. Collector madam delivered a special address after understanding the significance of the program by Dr. Lakshmi, Director, MDCRC. Dr. KC Ramaswami gave away 3 wheelchairs to the children in need which was donated by Rotary club of Coimbatore, West. Following this, certificates were distributed to the student volunteers by the Collector madam. A scintillating vote of thanks was later delivered by Dr. Nandakumar, pediatric neurologist, MDCRC.
MDCRC had organized a free Duchenne Muscular Dystrophy screening camp on 7th September 2014, at Kurinji Hospital, Nava India, Coimbatore which was inaugurated by the Coimbatore District collector, Mrs. Archana Patnaik, IAS. More than 10 suspected children were brought in for clinical diagnosis. After registration, the children were consulted by Dr. Nandakumar, and further, suspected cases alone were requested to give their blood samples for further analysis.
It was a gala event with the children feeling it was their day with the collector madam and the other dignitaries addressing them and making them feel very important.
Multidisciplinary Clinical Care – December 13 & 20, 2014
The last set of MD care session was held on December 13 and December 20. It was like any other MD care which had a combination of fun accompanied by the routine clinical examination and documentation by all the specialty clinicians at MDCRC. Since the number of children were more, the sessions were split into two days. Apart from all this, also, the ayurvedic physicians were there to assess the children based on the pediatric quality of life assessment score. This was compared with the pediatric score of the assessment done by us.