In May Christina Raj saw a video on Facebook being circulated . The video was about 3 children affected by Lamellar Ichthyosis. The family who live in a remote village in BHaderwah, Jammu are from underprivileged families and struggle with meagre income . They have hardly any food to eat and buying emollients and creams is a dream for them. The children suffer the most . The family is ostracized by society . The video was shot by JK News . Christina followed with the news channel , but they were reluctant to help with any information. After 2 months of consistent pursuit , Christina connected with the Bhaderwah Sarpanch My Shakoor Wani . He was very helpful and shared all the details . Christina called the family on WhatsApp video and also explained that she has the same skin condition . The family Arshad Butt was convinced that they have a support system now. They knew that someone would understand their pain. Christina planned a trip in a week to visit them . She sought help from a few benefactors who pitched in for creams, antiseptic creams, cotton, gause, soap, eye drops and warm clothes for the children as all the clothes were tattered .
Christina embarked on a long journey on JUly 15th 2024 at 2AM from Hyderabad – Delhi – Jammu and from JAmmu to 8hr drive to Bhaderwah.. The next morning on July 16th Christina went to the village , climbed down the valley for 2 kms to reach their house that was on a hilly slope. Christina’s feet were cracked and bled , so the walk on the rocky terrain was dangerous . I was shocked to learn that the family and the children have to walk this terrain everyday to fetch water .The slope down had the ravine down. Christina spent 4 hours explaining the skin care and regime to the family. The Hotel owner Mrs Gulshan accompanied Christina , as the family speak Kashmiri or a local dialect..
The 8 yr old boy doesn’t have an Adhar card as getting biometrics for ichthyosis patients is a challenge, this creates a problem for the family.
The Sarpanch My Shakoor Wani sent another family Mohad Arshad whose 4 yr daughter has lamellar . She also has Glaucoma and cataract that is affecting her eyes and needs immediate treatment to save the eyes .
I spoke to another family whose 17 yr daughter had Epidermolytic Ichthyosis and she has been applying Betamethasone Dipropionate Cream all over on her wounds . The skin has become very fragile and she has alopecia and looks like a 7 yr girl . Her toes are fused and she has difficulty standing and walking .
On July 26 Arshad Butt called me to inform me that the creams and emollients have made a significant difference in the childrens skin. He was happy to share that skin is not rough and poky to touch and the eyes that were watering have decreased as well. This is what the CIRM Foundation try to make a difference in people’s lives .
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CIRM Foundation has been on a continuous work to search for patients affected by ichthyosis and include them in the support group so they know that they are not alone in this journey of life.