Christina Raj: Founder & Volunteer
Christina (Tina) Raj is from Hyderabad. She was born with severe Ichthyosis a rare Lamellar and epidermolysis bullosa combination from the rarest form. She was born a collodion baby , with inverted eyelids, fingers and toes were clubbed. Her mom a gynaecologist took care of her. She is the longest survivor in Asia/ Africa with this rare form of ichthyosis. She has been shunned, harassed and humiliated all her life. Because of the extreme dry skin that forms every minute, the skin scales shedding depletes metabolism and energy levels leaving her tired and famished frequently. Eyes, ears and mobility are affected and doing personal chore is cumbersome . Getting access to education was a challenge as schools/ colleges weren’t ready to give admission to Tina. Tina is an training consultant by profession. She didn’t not let the skin condition and the pain caused by deep cuts , cracks and fissures that bleed , stop from surging ahead in corporate world. She still faces discrimination and harassment in the neighborhood she lives, because the apartment association thinks ichthyosis its contagious. Domestic help, laundry and maintenance team are forbade from helping or working for Tina. She is a real warrior and continues to fight for inclusion and acceptance in the society. Tina won the title Glamorous Social Activist in The International Glamour Project pageant Mrs India 2021 and made till top 15. Her appeal to the society is to understand challenges and limitations and accept people with Ichthyosis . Live and Let Live. Tina has also worked with Ms. Pamela Sathpathy, IAS, Collector of Bhongir, Telangana and has helped in tracing more than 6 ichthyosis affected children. With this organization she wants to support more and more people who need support and work at the grassroot levels. To reach out her please select Join us link on the site with comments.
Sirisha Peri: Volunteer
Sirisha is from Hyderabad, the loving mother of a child with Ichthyosis. She is a homemaker and an occasional businesswoman trying out different things.
She has two sons, the younger of whom has Ichthyosis. She faced lots of challenges as the son grew up. Along the way, Sirisha has learnt many things as he grew from a kid to a teenager. She has searched throughout the Internet and visited multiple doctors in several countries to try and find a cure. What she found after all the searching was no cure but understanding. She understood that only maintenance and management could help her son.
Due to his appearance, they have faced rejections from people and schools. Initially, she felt disheartened about these situations, but his bright smile and confidence inspire faith in those that see past the condition.
She wants to share her understanding with everyone affected, helping as much as possible.
Dhiren Patra: Volunteer
Dhiren Patra is from Nasik, India. He was born with Ichthyosis type Lamellar. He was born as a collodion baby. Dhiren and Tina met more than 15 years ago and started the support group. Dhiren has also faced difficulties in his childhood in school and adjusting to society. A strong framework of family and friends have helped Dhiren lead a positive life. His main focus is supporting people with different types of Ichthyosis and help drive the vision and mission of the support group. He also provides support to the new team members when needed. Sometimes he is also seen talking with new team members providing guidance on using skin products and also providing career help. Dhiren current lives in Belgium with his wife and works as a Cyber security consultant for Big 4. During his free time he enjoys cooking, biking and tasting a new type of chocolate or beer !