Latest News

Hyderabad October 2023:

10 yr boy with severe Ichthyosis and Sjogrens syndrome. Christina (Tina) contacted UNICORPUS Healthcare to seek help for Vicky, who has mobility challenges & comprehension issues. CIRM India and family of Vicky consulted the Word and Deed hospital, met Dr RajKumar , an orthopedic. He checked Vicky and advised physiotherapy to work on his mobility and brain coordination to help him walk without support. Dr Nikhil and KumaraVel, the chief physiotherapist, conducted free sessions for 2 weeks. Thank you, @unicorpus_health_foundation

Visakhapatnam September 19 & 20, 2023

CIRM India – Andhra Pradesh patients meet Christina Raj, founder & Director, who traveled to Visakhapatnam to meet ichthyosis patients who live in Andhra Pradesh. She was picked up by a kind benefactor Mr Ram, a businessman in Vishakhapatnam, He offered to take her to the little boy , 7 years old Jaiwardhan , who lives in a village with his family . She had to travel to a village that’s 200kms away from the city. The village is in a far-flung remote corner, without easy access for transportation. The family is from a very low income group, who struggle for food. The medication for the 7 years ichthyosis boy is impossible. The 7yr boy’s limbs are curled up like tendrils, too soft and the bones are fragile. The boy is paralyzed from his waist below. He can’t sit for more than a few minutes, he slides and slumps on his side.. The boy is dependent on the family to even drink a glass of water, as someone has to make him drink. The boy winces at the slightest touch. He sits in a dark, cool place as the weather is sultry, humid, and hot in his place.

Tina experienced warm hospitality as she explains: “The parents insisted that I have something, I didn’t want to break their heart, I asked for half a cup of black tea/ coffee, whichever they have. I was shocked to see that they were asking neighbors for sugar, tea leaves and milk to prepare tea for me. The neighbors were helpful, the tea was ready in 5 minutes, they brought me a cup of black tea, it had the love of humanity and solidarity. The neighbors also insisted that I have lunch. I promised to come again and have lunch with them. The neighbors are poor, but they were happy to see that someone had come to see that little boy , someone who has skin like that little boy and who can understand the pain and challenges of ichthyosis. The boy was scared to be close to me, fearing I would be rough and grab and twist his limbs as everyone did earlier to check. The parents tell everyone who came for a photoshoot was rough. Is this humanity causing physical pain to anyone? The parents told me that 3 years ago, some guy impersonated a Govt official with a promise to get help, took RS 5000 INR from them, and disappeared. The family is quite poor, I saw that they survive on the daily wage income, which is very hard for the family to sustain and take care of the boy and buy creams and moisturizers for him. The parents shared the ordeal they went through when the boy was admitted in a Hospital. He was in ICU for a month, then one morning, a lady in white saree came and chased them away from the hospital, she said they had overstayed and were just shooed out. They were not given any discharge papers or diagnosis papers. Is this how a rare disease patient is treated in our country? Everyone has the right to live in dignity. Rare disease patients need to be treated with care, given personal space. I travel a lot to meet severe Ichthyosis patients across India because we don’t have representation in India.

On Sept 20th at 7 am, I was having breakfast in the hotel, I received a call from another family who travelled overnight and came to Vishakhapatnam with their 4 year old son Mohd Basha. He has Ichthyosis Vulgaris, They aren’t aware of skin care and management. They were using coconut oil all over his body, which made the little boy greasy and oily all over. I could see desperation and hope in the parent’s eyes, they were happy to be part of an ichthyosis community that understands and accepts everyone. Christina spent a few hours with the family, bought white petroleum jelly, Glycerin, Glycerin bath gel, cotton and antiseptic creams. The trip to Vishakhapatnam was very emotional and successful. CIRM strongly believes in the adage “Leave no one behind “ .”

7 years old Jaiwardhan with Tina

Chennai (August 2023) :

CIRM is happy to share about our 2nd National meeting held in Tamilnadu, Chennai, on August 27, 2023 .
Center for Ichthyosis Related Members Foundation India- National meet , Tamilnadu @ Chennai, on August 27th, 2023. The meeting was organized at Asha Services in Nungambakkam from 10 AM to 3 PM. The CIRM Foundation was represented by Christina Raj ( Founder & Director) and Nagarajan Anjanadri ( Vice President) . The ichthyosis patients across Tamilnadu had traveled miles to attend the meet along with their families. The patients were mostly children in the age group ranging from 2 months to 18 yrs. 90% of the families are from underprivileged categories. The family members were emotional seeing other patients. They were relieved to see that they were not alone battling this rare genetic disease. The families also knew that there was someone whom they could turn to for help and advice. Many traveled overnight to attend the meet. The families were shocked to see Christina raj, the oldest survivor in Asia and Africa. The families were informed that the life span of severe Ichthyosis patient is not more than 10yrs.

Christina Raj started the meeting by a welcome address. Nagarajan supported by translating in the regional language. We had invited Ms Annupama Chandrakekha , a renowned singer, composer and writer of tamil movies. She spoke about living with Vulgaris ichthyosis.

Christina, Annupamaa and Nagarajan all shared skin care tips and skin management regime to the patients , caregivers and parents . We distributed white petroleum jelly, Glycerin, cotton, bandaids and emollients to the patients. A simple vegetarian lunch with delectable spread was served . After lunch the patients and family members shared their stories and struggles in society. Everyone goes through terrible experiences. All are harassed, shunned, abused, beaten. 95% of the children don’t have access to education. Parents struggle to buy expensive creams and moisturizers that are prescribed, which doesn’t help , but drains them financially. Everyone struggle to get disability certificate. We parted with mixed emotions, with a promise to meet soon . We aren’t alone . We are here to elevate each other. We believe in leave no one behind. We thank the Tamilnadu ichthyosis patients for making this event a success. We also thank worldpatientsalliance, GlobalSkin – International Alliance of Dermatology Patient Organizations United Nations World Health Organization, Timber Pharmaceuticals, Inc.
@worldpatientsalliance

CIRM meets families in Telangana

Warangal (July 2023) : After years of virtual meeting, the ichthyosis group CIRM finally met for the first time in Telangana.  This time, it was the Telugu group meet.  Dhiren ( President) Sushma ( Secretary) Kunal and Tina the Founder , congregated at Warangal. The meeting was organized at Hotel Hotel Ashoka in the board room Galaxy.    We discussed the skincare regime and the importance of skincare. To use the right creams . We also discussed the challenges we face. We drew strength to stand together and surge ahead. We also distributed creams to the families whom we met. Dhiren had come from Europe for this meet. Kunal traveled from Bangalore. Sushma  was the main organizer , who planned and arranged the logistics for this event. CIRM, Thanks everyone, for making this event a success.

We will have similar meetings for every state soon.

Tina and Dhiren meeting with CIRM members
Meeting at Ashoka hotel, Warangal

CIRM participates at GlobalSkin Conference hosted ELEVATE 2023

Brussels (June 2023):

The CIRM India joined the Global Skin International organization as an Associate member. CIRM India was invited by IADPO (International Alliance of Dermatology Patient Organizations, Canada) for the International Conference ELEVATE 2023 . at Brussels, Belgium from May 31st – June 4th 2023. Christina Raj (founder –CIRM India) represented Ichthyosis group from Asia and Africa. The Conference was held at The Crowne Plaza Airport Hotel at Brussels. Patient leaders, renowned dermatologists, scientists and delegates from pharmaceutical companies were at the prestigious event.

Christina with other participants

The ELEVATE 2023 Conference was designed to strengthen connections, provide opportunities to collaborate and fuel our purpose.: 
Elevating our Voices Together — Jose Antonio RUIZ-POSTIGO, from the World Health Organization
(WHO) gave a presentation about the WHO and the opportunities for patient organization involvement.
Advocating for Skin — Patient leaders shared inspiring case studies of how they advocate locally, nationally, regionally and globally.  
Navigating Compliance and Patient Engagement with Pharmaceutical Companies — Workshop topic led by the team at The Synergist.  
Elevating Our Cause — Came together with fellow patient leaders from every region for a facilitated discussion about regional needs and how to stimulate policy change necessary for access to treatment and care of people living with skin conditions and diseases. 
The Village — Shared table space for patient organizations, strategic partners and sponsors to display their printed materials. 

CIRM India thanks Thank Marc Yale (President) and Jennifer Austin (CEO ) and entire team of Global Skin for organizing this wonderful event and sponsoring the travel for Christina from India

Tina met with Medical officer NTDs at World Health Organization Dr José Antonio Ruiz Postigo and shared the concerns from CIRM. He promised to look at the concerns.


Group picture at the conference

CIRM participates in the National Dermatologists conclave Jodhpur

Christina facilitated by Dr CR Srinivas at National Dermatologists conclave as part of Patient / Dr Interaction in AIIMS Jodhpur ( March 2023)

Jodhpur : Christina was invited to AIIMS Jodhpur, for National Dermatologists conclave as part of Patient / Dr Interaction. A rendezvous session with Dr CR Srinivas a senior dermatologist helped bridge the gap, the candid conversation with Dr CR Srinivas helped the medical fraternity understand the life of a ichthyosis patient in India. The mounting medical expenses, constant medical intervention and expensive skin emollients take a toll on the patient and family , economically , mentally and financially . Christina was also facilitated by Dr CR Srinivas as the longest Ichthyosis survivor in Asia.

 Dr Ayush Gupta, Dr Akshay  Jain had arranged for the travel and stay at Fairfield Marriott , Jodhpur .

Christina Raj at  Red carpet premiere on March 23, 2023 at Cinepolis , Seawood Central Mall , Navi Mumbai

Navi Mumbai (March 2023): Christina Raj was invited for the OTT webseries   of The International Glamour Project pageant,  Red carpet premiere on March 23, 2023 at Cinepolis , Seawood Central Mall , Navi Mumbai .

Christina’s life as living with Ichthyosis was captured for the first time. It’s not a glamourous life , but a day living in pain , taking care of skin and braving all odds .

She was a contestant for season 1 for Mrs India 2021. On March 23, she was part of the jury panel for season 2 . It was an honor sitting on the other side of the table and judging the Queens.