I promised to continue to share stories about personal journeys with Ichthyosis on my blog even though Ichthyosis Awareness Month is over. My blog is open to anyone affected by Ichthyosis to share their story – please contact me if you want to publish your story here.
Today Tina shares her story. She has Lamellar Ichthyosis and lives in India. When I received her story, I cried. She and her mother have been through so many struggles in her life, and the difficulties she’s had with people’s reactions, medical care and costs have made me feel extremely lucky for the healthcare we are entitled to in Australia, as well as a rather high level of equality tolerance of disability here compared to what Tina has experienced in India. That Tina has had her ambition and right to education stifled because of stigma saddens me so much.
I also wish there was some sort of partnership between the Australian (and specialist Western) hospitals and hospitals in countries such as India to offer education and support to doctors who aren’t very informed about conditions like Ichthyosis.
I am very grateful for the online community that has afforded Tina some support after all these years. Finally she can feel a part of a community where people understand her condition.
Meet Tina, and keep a tissue handy. I thank Tina for being so courageous to share her story here, and I wish her and her amazing mother the very best. It’s Tina’s birthday today – happy birthday Tina!
EDIT: 24 September: Tina’s mother passed away this week. I have set up a donation page to raise finds for a cooling vest and creams for her. Visit My Causes to donate. Here’s hoping we can help ease the burden for Tina.
“I am Christina Raj, 37 years old from India. I was born a collodion caby. My Mother, a gynaecologist, took utmost care of me as a single parent. My father left my mom as I was born with a skin defect.
Mom had a son who was born 2 years earlier to me with Lamellar Icthyosis; The doctors who attended to her told her that she gave birth to a weird looking baby. They were not aware about the colloidal baby in those times in my place. My bother was kept in isolation in the hospital but after 5 days he developed pneumonia as he was exposed to cold and died. My mom was informed about his condition only after he passed away. My mom had to bear the taunts from her elder sibling that she gave birth to a monster. I was born 2 years later.
When I was born as a collodion baby, My mom instantly guessed that I was born with a genetic disorder. She was prepared this time and fought with the hospital authorities that I will not be kept in isolation but with her. She had no job and no support and was all struggling with her meager savings to take care of the hospital expenses as I was in a critical condition. I was swathed in bandages all over as I had a sore look and the blisters were real bad due to skin tightening. She said that even the corners of my mouth had to be cut to feed me as the skin was tight across. The eyelids were inverted and the hospital folks told that I was born without eyeballs. My mom had to gently pull the upper eye lid after a week. My mother as treated as an outcast , she was blamed that she gave birth to a child who was a monster look like coz of her sins, she was never a part of any functions or family celebrations and was always alone.
At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive.
As the years went on, I became more and angrier at people’s reactions and became more shy and distant. I would hide because I knew I was different. Now I decided that every time someone stared, I would smile and wave and at times I would tell them if they folks at home did not teach them manners and that it was rude to stare.
Lamellar Icthyosis is unheard of in my part of the country and the dermatologists were not helpful at all. They are not aware of my condition and they had advised my mom to use Liquid paraffin or Vaseline after bath. This was a messy affair which made my clothes, my skin look so greasy and oily. Mom had a tough time with getting my clothes laundered. In summer the paraffin/white petroleum jelly used to increase my woes by adding to the body heating up and heat intolerance. Cooling vests are unheard of in my place. I remember when I used to have final exams that were held only in summer here was torturous for me. I had to carry a bottle of water and pour it all over me to keep me cool and prevent me from fainting due to heat stroke. Needless to say the kind of stares and explanations I had to go through was another ordeal. I have severe dry eyes that used to water constantly but now after I started taking Almonds, Acetretin and constant care by using Glycerin with a little white petroleum jelly has made my life a little better. I used to apply only vaseline for almost 34 yrs. When I met few people from ISG , they told me abot glycerine mixed with vaseline. I started using this and VOILA… It helped me 40%. My skin does not crack and bleed that much now.
I have one problem that has surfaced recently where my body swells twice the normal in a day soon after waking up because of overheating due to any physical activity, such as a basic one like brisk walking also. The doctors here are clueless as to why my body swells, I see my body bloating the moment I start eat or drink anything. Even a glass of water tends to swell my body.
I am often made fun of when I walk slowly. I have terrible problem walking with deep fissures on the heels and I tread cautiously and they are very painful and often bleed. I use my finger tips to type while working and people ridicule me even for this.
I wanted to become a doctor as my mother, but I could not as I have to go through the labs as an intern. The college discouraged me stating that I being abnormal will not be able to do it. I now work in a company. I always have to compete with the normal and people still tell that I am not normal so its difficult. I do not get any tax benefits and the tax deductions are huge. I have tried getting at least tax exemption, but Indian government says that my condition does not come under disability category. I am the only earning person and my 3/4 salary goes up in buying creams, vaseline, band aids, Acetretin, antibiotics, pain killers. The trip to the doctors is another money sponger. Every time i go to a different doctor, he is clueless about Ichthyosis. They write a battery of tests all over. I have to spend 2 hrs explaining about my condition in educating them further. This really leaves me frustrated.
My mother was my personal physician. She now is bed ridden as she was diagnosed with Vascular Dementia. I have to take care of her medical expenses as well now. My mom is 75 and retired. My mom has been diagnosed with Vascular Dementia and now she is almost in a vegetative state in bed, lying in the same position since 6 months. I already am the sole earning member in my house and in addition to my medical expenses that I spend on the creams, soaps, antibiotics, ointments, other medicines and the regular blood tests which the doctors write, I now have to take care of my Mom’s medical care. I do not have any kind of medical support. I could not admit my mom in a hospital as it will be expensive for me. I do not have any savings from my Mom as she even though being a Gynaecologist did mission work. My mom worked in a mission hospital on a meagre salary. She said she wanted to do something for the poor who cannot afford medical care. She worked in remote places, she was very kind and when some poor patients who traveled long distance for medical treatment but had no money for food, she gave food to them. She never could see any person go hungry. She always said “God will provide for us”, but we will have to share and help people. Now, when I asks the doctors to check on her they talk all commercial. My mom is almost brain dead; she has been lying in the supine position for last 6 months. I feed her water and liquid supplement with the help of a syringe. She has developed bed sores all over behind and it’s so painful that she groans in pain.
I put on adult diapers for her everyday in the morning after a through clean up with lots of antiseptic soap, followed by application of antibiotic cream so that the bed sores heal soon. The challenge is when one heals other surfaces. She has lost her co-ordination of movement of limbs and her arms are crossed over on her chest following a blood clot in the brain, she cries when I try to slowly release her hands. I will take care of her till her last breath. She has done so much for me and I owe it to her.
I am emotionally, mentally and physically worn out with my own challenges and now, I am sandwiched between, work, my mom and taking care of house.”
For Ichthyosis and appearance diversity resources, click here.