January 2020

 The New year  2020 , started on a bad note.  The apartment association  consisting of main bullies started harassing me. On Jan 3, 2001 they posted notice all over the building tarnishing my name.

Kota Srinivas Gupta - a tenant , - vaishnavi marriage bureau ( self proclaimed president)

Yethish vittal - an accountant in Honda showroom in Kondapur , Hyderabad ( self proclaimed secretary)

srinivas adepu - proven ads - He is the main cause and instigates everyone against me , as I stay opp his flat.

Subba Raju - LIC agent who hardly stays here , but ensure to stir and cause trouble supporting these guys.

These 4 guys have been targeting and harassing me since the day I moved to this apartment in 2001.

Srinivas adepu of proven ads typed a letter to have me removed from the apartment. and all of them signed and stuck notice on my car all over. Yethish vittal slammed furniture on my car creating dents and damaging my car.

On Jan 26 , 2020 - These 4 guys again wrote another letter and got signatures from other residents by threatening them . They submitted the letter in the police station to have me removed from the apartment.

This time , I faced them bravely , I am fed up ignoring and being quiet to their abuses, threats and harassment.  Pls say NO to abuse , specially the disabled category , who are already going through tough times. 

The pandemic  and spread of the virus turned the world topsy turvy . I had major setback in every aspect. No job, Savings depleting fast and the house registration stalled by the officials dampned my spirits.

Good Samaritan- Family and Friends

After my Mom passed away , I felt I was alone . I had to take care of my uncle .  Then my cousin Eugine Ross , Louella Ross and their family stood by me . I thank Eugene Ross for being the pillar of strength for me.

After I resigned in 2017 , I was shattered , because after 20 years of work in the corporate world ,with my health deteriorating after the trouble and harassment at workplace  by Rajeev Bubber and harassment to vacate the apartment by the apartment association  , I decided to resign and take a break .

I was in dire financial trouble , because my savings were sapped up by the legal process and courts .
Ajaz Khan , my soul brother stepped in and helped me many times. He calls up often and keeps track about my well being.

He launched a training company for me , He helped in setting up the  official website " Right Ally Solution"
He has been constantly pushing me get back on track , professionally.  He used to surprise my Uncle with cakes.

In my 20 years of  career at Motorola  Pagepoint / GECIS / Genpact , I made friends , who stand by me even today. Shubhra Singh, Amit Kapoor , Sanjeev Sampath, Anil Pai , Padmaja Arav, Hansa Nammi, Ranjit Kaur, Tejpal Singh , Sameera , Nivedita , Nimmi , Sujitha , Tabu , Shireena , Kamna Assudani, Anurima Varghese , Silva Nivin, Yuvita Anand .

Lamellar Ichthyosis - Part of Exclusive and Extraordinary beauty pageant - Sept 2019

I Thank Sana Murab and the entire  Ms. Exclusive and Extraordinary ( E & E) team for considering my nomination to represent in the Beauty Pagent  in Sept 2019. I was very well taken care by  Ms. Moumita , Shiril and Ayushi , who kept tab on my health during my entire stay .

I Thank the jury members of the pageant ; Ms Anju Handa, Ms Maxime , Mr. Sachin Puri, Mr Berry, Ms Darine .

I thank Gargi Samarah , Pushpa , Rebecca , Dr Vanora , Dr. Simmy , Dr Aakanksha  Ritesh , Anjana , Manoshi, Yukthi , Arvinder , Queen ,  and all the beautiful ladies ,who accepted me and encouraged me in every activity .

I never thought  that I would even be considered to participate in the beauty pageant.

I was awarded 2 titles ;

1. Ms Exclusive and Extraordinary  - Beauty with brains
2. Ms Exclusive and Extraordinary  - Good will Ambassador.

I thank Tejpal Singh Virdi  for working hard on my finale outfits. I am fortunate and happy to have worn his creation. He  spent a lot of time , getting accessories and footwear to match with my outfit. The biggest challenge was,  He had to keep in mind my skin condition  and work on the fabric and design.

 

Lamellar Ichthyosis- Life of Lamellar Ichthyosis travails - skin care

Lamellar Ichthyosis is truly terrible to live with . I don't know how my day will be , I cannot plan anything . Living in a country , without any help , assistance , access to medicines is a torment in itself.

When I wake up , I have to run to the washroom and wash my face, hands and legs well . I apply moisturizer all over , because in the night the skin dries badly , forms scales , then the cuts, cracks and fissures all over the body that  is so painful. 

We cannot think of a normal day like others , do workout . No , I cannot workout or do any cardio , because I overheat and with my pulse and heart racing , I feel I will get a heart attack. My heels are all cut and bleeding , walking slowly around doing the chores take most of my time.

After breakfast , I have a bath , this saps up all the energy I have , because I have to soak, scrub slowly and remove scales all over the body . I have to exfoliate in a slow manner , so that skin does not get pulled off roughly. The soaking , exfoliation and scrub takes 2 hours. I would have exhausted all my energy by this . Soon after , I need to apply vegetable glycerin  on wet skin all over to seal moisture, from head to toe. I have to later apply White petroleum jelly over that , so that the skin does not dry , cut and crack quickly.

I also have to apply a little of Glyco 12 % cream and Pasitrax cream over but only on hands, face and neck.

These creams are expensive and we do not get any subsidy at all. I used to take Acitretin / Isotretinoin orally . this helps in less scale formation. 

After bath , In an hour , I feel that the scales have covered my entire body already . My face  dries soon in 30 mints , I have to wash my face every hour , so that the skin remains moisturized. The constant scrubbing, cleaning, applying moisturizer leaves my hands and fingers so sore that I am unable to do anything .

I get easily affected by a mosquito bite , I am highly intolerant to heat or cold. I have to always dress in layers always. I am prone to staph infection , Hay fever , allergies , itching leading to infections every other day. I always have to stock on pain killers, antibiotics , antihistamines, antiseptic bandages and  gauze.

I cannot use the AC or Fan , so I try to sit near the window at home  for breeze in the mornings.  The sight of me makes these neighbors loathe me. They spit on me , throw dirty water on me. I have sealed my bedroom window for good because of this.

These days during Pandemic , I am at home , so I just bathe in plain water almost 10 times , I do not scrub or exfoliate . Before sleeping at night I have to bathe , scrub and exfoliate  and apply cream and glycerin . I spend half my life and day taking care of skin , bath, apply creams  and other meds that is required.

My entire bed, bedroom , washroom are always in a mess. The skin sheds like dust and in pieces all throughout day and night.  The constant formation of skin and shedding of skin is a continuous cycle throughout.

Personal hygiene is most paramount. Dusting the bed /sheets multiple times and sweeping the room almost every hour is another torture. Without any domestic help , Life for an ichthyosis sufferer is terrible . Washing  clothes often to remove the grease of the creams is another torture.

I cant hold anything heavier than 2 kgs , I cannot open any tight lids, even a sealed water bottle is a challenge . I cannot change the gas cylinder in the kitchen because of  I cannot pull the cap off the cylinder. I call the security for help, but the RWA  has instructed them not to help me.

All the skin that sheds and falls , sometimes falls in the eye . this leads to cornea get scrapped and damaged. Rubbing eyes with the dry hands or fingers , damaged my cornea and retina. with all this dry eyes and glaucoma , its terrible to live.

Living in a clean environment is very important. The surrounding has to be very hygienic for people with Lamellar Ichthyosis to survive . The place I live in unkempt and sewage flowing from every corner. I very often used to get severe Pharyngitis , because of the dust , pollen floating around . Garbage piled in corners also emit bad air . 

I often get staph / bacterial infection , I suffer for almost 8 months as my body doesn't heal fast. My joints and bones are always inflamed and hurt through. Now, the only exercise is , I walk for an hour in the corridor. 

I need water to wash and bathe often. but few nasty RWA  cut off water supply to harass me . This is the inhuman RWA , I have ever come across. I need electricity , because of my weak and partial vision.

The skin build-up inside the ear is another problem to deal with . The skin dries and starts building up. This leads to hearing impediment most of the times. I have to constantly clean the ears every hour. The cleaning leaves the inner ear raw and vulnerable. The loud honking of cars , loud noise and terrible music hurt my ears , that it bleeds within.

This is the reason , I plead with the apartment residents to be sensitive towards my skin condition and its challenges .

My body doesn't regulate temperature , hence the heat and cold trouble me . The heat is my worst enemy.

The only season that suit my skin is Monsoon . The skin is at its best when its raining. 

The skin on my palms and soles are so slippery , that I don't have a good grip / hold . I walk on my toes most of the times , because of the cracks on the feet and soles make it impossible for me to walk or run. To climb stairs , I feel that I am going up the Everest mountain. 

I avoid Church , functions , movie theaters and Mall , because being in the crowd , I get anxiety or panic attack. People in India don't follow personal space protocol. Whenever I am being pushed or jostled , I end up in deep bruises all over my body . 

I went through trauma going to the courts for hearing with my 89 yr uncle ( he had last stage cancer ) . I used to be severe  pain after reaching home. 

I cannot eat hot , spicy, or oily  food. I am highly gluten intolerant . I get allergies  easily  that could be triggered by dust, dander , pollen , food , detergents and its a long list.

I  seek help from the Indian Government to consider  Lamellar Ichthyosis under the physical disability category.

With this severe painful condition , we find it difficult to run around departments to get any work done. When I state my painful ordeal , I am asked to pay extra money , so that I don't have to stand for long or frequent the offices. 

There are almost 30 people in India with this Lamellar Ichthyosis condition. They are in the poverty line , I seek help for such cases . 

India stands on par with all countries on every issue , but we don't have representation for our category . WE are denied right to study , work , even basic right to live in society .  Marriage is off the cards because of the skin condition and appearance . 

The medicines cost so much that our savings are depleting. 

To add to our woes, people too take advantage of our helpless condition and  sponge money from us.

Lamellar Ichthyosis and work life balance.

After completing my PG in English and Environmental Management from Central University , I was scared to even think about going to work. The thought of 9am to 5pm job terrified me, as long hours without access to washrooms or water was my biggest fear.  My Mom was very persistent and insisted that I should  work and be independent . I went for many interviews , the moment they saw me , my appearance used to make them cringe; that is what some of them told me. I must have attended 50 interviews that year. Some told me , how could anyone ever hire you?

My first job , Pagepoint Services ( Motorola JV) , I was interviewed by Krishna Kumar Subramaniam ( CGM) . He asked me few questions , then he said that I need not worry, and that place was a family. I thank KK, Nimmi , Amit Reshamwala,  Subramaniyam ( Subbu) , Sunita Tejwani, Minoti Behara, Shireena, Sujitha Reddy, Srinivas Chada, Dona Kumar  , Anil Kumar , Alexy Ninan, Ajay Alex, NC Vijay , Alwal Reddy , Vivek Chopra . These are the wonderful people who accepted  and helped me sail through and earn laurels  as the best Tele-marketer many times.

I joined GECIS , GE Appliances in 2001 at Hyderabad. I  went for training to Gurgaon for few months . I had a challenging time learning . The different shifts and long hours took a toll on my skin , eyes , hearing . The fingers and joints used to ache throughout . My scalp went dry layered up with thick scales. I wouldn't share with anyone , what I was going through .  My trainer , Rahul Katariya was a strong support system . He was very patient with me, learning with my limitations and challenges. Thank you Rahul .

The teams I worked with in GECIS / Genpact with different processes , I learnt many things in the real corporate world . I became more strong , confident  and of course hid my flaws and insecurities . I had amazing friends at workplace . We still are best friends .

I was moved to another  joint venture with  NIIT, Uniqua as a training consultant . Cherian Thomas, Meghdoot Dadegaonkar , Harjinder Singh Sidhu, Kirti Seth .I won many awards,  won the much coveted award "Award of Excellance " 2010  at NIIT , Hyderabad .

My life started falling apart  after a new person , who never worked in any organization earlier  stepped in as Manager with NIPE. He was very different , harsh and foul  I ever encountered at workplace. He used to constantly humiliate me , for my appearance , skin . He used to pass snide and derogatory remarks . He was upfront in telling , that how could anyone even employ such a terrible one ? 

I told him that I have many health issues and I work in a manner that does not hurt me or leave me in pain. He used to scream and shout at me . He never knew how to talk to a lady ?  He used to blatantly say , that only good looking people will get work.  

Suja Ajith and Itish Arora , changed the NIPE team structure. I thank them for making my last few months  memorable, I resigned in peace.

Even though a training consultant , I was the New Hire Program head for Genpact Hyderabad. But, I never felt an outsider at all. Genpact values certainly speaks for itself.   I Thank Shubhra Chaturvedi  ( New Hire Orientation Head for Genpact ) , who supported me in every way.

Legal fight for house - 34 yrs - Harassment and threat by illegal occupants

My Uncle - Joseph Alec Ross , He retired  as a Cricket Coach with Sports Authority of  India  in 1988. He was a bachelor , he dedicated all his life helping  his  2 sisters children's education. He remained a bachelor ,  but he spend money for his nieces weddings , money to build houses.

Soon after  uncle retired ,  did not get his pension  for 5 years , he struggled for basic food  , because he spent his money on his 2 sisters children. They had promised to take care of him, but when he returned to Hyderabad , he was thrown on street. He struggled  and lived in penury , surviving on tea and bread .

Sheela  Solomon and her children Vinod Raj Mathew, Leo Solomon , Shanthi Regina Paul and Vasanthi Daniel beat uncle 4 to 5 times.

When Mom and I relocated to Hyderabad, My Uncle moved in to live with us. He had become a loner and recluse , with the constant beating, abuses and harassment meted out Solomon Clan. When these realized that we were taking care of Uncle, they started harassing our family. They wrote letters to my work place  stating that I had leprosy . They beat my mom almost 5 to 6 times . They slammed her  head on the wall . Vinod , Leo , Shanthi , Vasanthi had come to Alliance house and beat her my mom black and blue.

My mom was hit on her head multiple occasions , that led to her brain damage. She died in September 2013 after a long painful battle.

When  my  Uncle Joseph Alec Ross returned to Hyderabad in 1982 , He found that Susheela Solomon has confiscated his house  . He  filed a case in the court , OS 962/1984.  The legal battle that started in 1984 went on till Oct 2017 . My Uncle won in all the 3 honorable courts in India. The final judgement was passed on July 8th 2019. 

The illegal occupants , Vasanthi Daniel and her family are still in the house. They refused to vacate. The honorable Judge Durga Prasad had strictly instructed them to vacate the house . But instead she abused him while walking away .  My Uncle and I went to take possession of the house on July 9th , 2019.  Vinod Raj Mathew , who has relocated to USA , is still not letting go of my house.

Vinod Raj Mathew and Vasanthi Daniel  are resorting to street behavior that was imbibed into them since childhood. Here are the details of the cases , that the Solomon  Mathew family lost in every court.

     a.       OS  - 962 / 1984

b.      SA     352 / 1995

c.       AS      62/   1997

d.      EP      157/ 2008

e.      EA      187 / 2019

f.     IA       88918/ 2019

I appeal to the Honorable President and Prime Minister  of India to help get my house back from the clutches of the illegal occupants Vinod Raj Mathews  and Vasanthi Daniel. 

We have taken possession , but still they refuse to budge. I appeal to the Honorable Supreme Court for Justice.

1. Vinod Raj Mathews 

3530 Herons Cir, Reno , Nevada -2050

2. Vasanthi Daniel 

lives in my house in Chilkalguda.

works in HSBC , Hyderabad  as customer support executive.

 

I

Tina - Life with Ichthyosis in India- Harassment by Alliance House RWA members

The day I was born, and when my aunts came to know of my condition, none of my aunts visited Mom in the hospital. My eldest aunt always used to refer me as the demonic child that was born in the family. I  wasn't given milk or food , my youngest aunt used to lock the cupboards in the kitchen , I  literally starved as a baby. I was treated badly and indifferently by close relatives.

My maternal uncles were very kind and used to treat me with love . Joseph Reuben Ross, Joseph Alec Ross were the two benevolent souls our family . My Mom  used to get scared to send me out to play, because of the ill-treatment meted out on me. I never had any play mates as a child. I never knew what sleepovers were.

Parents  used to tell their children , not to touch me or even come  close to me. I always used to be a scared child always.  Most people had a disgusting kind of look , whenever they see me . I hardly seen anyone smile. So, I am well aware of social distancing and isolation since a child.

My life changed , when I went to the live with the missionaries . I  realized that all aren't bad and mean.

I made few wonderful friends Sunil Nagpal, Sunit Randhawa, Anoop Bharadwaj, Madhu thonta , Dr Sudha .

My Mom and I relocated to Hyderabad in 2000. We had to change 4 houses , as the owners behaved badly  later , once they saw me . In 2001, We moved to a flat in Alliance house apartments in 2001. We bought a flat , have been staying in this apartment ever since .

Alliance House apartments ( self appointed  and self proclaimed association members) 

Srinivas Adepu ;  He owns  a small newspaper agency ( proven advertising 

We shifted to a new place in Secunderabad , on January 14 , 2001 . Srinivas adepu  walks straight in  the next morning at 6 am , he looks at me , all dry and scaly and made a disgusting look kind of face. I woke up all dry and scaly , this fellow has dirty habit of walking right inside peoples house and asking personal questions. He asked if only ladies have come to live in the house. He still walks into any house in the apartment , he hasn't changed  this bad disgusting attitude , even though he has 2 daughters . This guy has been targeting my family because of my skin and appearance. My mother and I used to live in constant fear , as this fellow is a loud mouth , uses abusive language blatantly . He has been targeting me family ever since. He is loud, uncouth and  asks personal questions to everyone . He has a gang of accomplices , who dance to his tune,

Srinivas Adepu had disconnected water and electricity  supply to my flat at least 5 times. Once, we didn't have water and power for 4 days continuously . We always used to live in constant fear of being chased out from here. He used to accost my uncle outside and threaten him. This fellow is known to threaten seniors , when he sees them alone. 

I could not tolerate this harassment and bullying anymore and I told then sternly to back off and let me live in peace , because with age my physical disabilities and endurance also is diminishing. This infuriated this fellow more and he started to find ways to harass me more everyday . One day his wife Sujata adepu , went ballistic and started abusing and this guy threatening me sitting inside the house. He and his wife used all the expletives on me . I have an audio recording of all this. 

I  filed 2 cases on them The first case filed against Sreenivas Adepu and his abusive violent wife Sujata Adepu on  May 1 was under IPC section 70C and another case was filed on July 22 under IPC section 70B . I don't know what happened to both the cases . People with such severe rare disability should be protected , so that none harass them.  People like us , with severe conditions find it difficult to manage their life everyday , why would we want to fight with others?

Srinivas adepu also tells the staff , that none should help me or answer my call . His daughters are just like him. They make fun of my appearance and do snake dance in front of my house. His younger daughter Slokha  ( studies in Bhavans ) used to play football , kicks the ball hard on my door and runs away. I used to tell the parents that I get anxiety attack and palpitation , but they laugh . His eldest daughter Sheetal  , now is doing MMBS in Bhaskar medical college. She used to say see a demon is coming . 

Even now , Sreenivas adepu, sujatha adepu , slokha sreenivas adepu comes and screams, shouts talks loud on phone  loud causing distress to the ailing patients who reside here .

Yethish Vittal ( secretary ) - Yethish vittal , the secretary for almost a decade . He listens only to Srinivas adepu and threatens others . When I was abused and harassed by the cleaners ( Shankar and his family) Yethish never supported me . The apartment had garbage dumped inside the underground cellar for almost 30 years. The part I reside used to be heavily infested with rodents , parasites crawling all over , carcass of dead dogs, cats dumped there . I live in the 2nd floor. I was constantly affected by staph infection. Mosquitoes swarmed around all through the year. I used to get Malaria, Chikungunya . I was constantly on pain killers, antibiotics and antihistamines. My health was getting affected. When I complained on common WhatsApp group, I was ridiculed , then Yetish deletes me from the group for complaining constantly.

Many times the secretary threatened my family , supporting Srinivas Adepu , without thinking that he is hurting me more.

  

In every country, the  physically challenged are treated with kindness , but after seeing you guys , I think why did God create this Earth ?

My ear has been bleeding and oozing  because of the marriage/ birthday celebrations. I am going through trauma for years .

Srinivas Gupta Kota ( Tenant and standby President ) Vaishnavi marriage bureau: Being a President , I thought , he would understand my condition. I told him my story , but later , he turned out to be another accomplice of these guys. He used to make fun of me stating , you complain to the police commissioner , he is my friend and I have tea with him everyday.

He came home and threatened me for approaching the Police for help. He said , next time don't go to the cops , or you will have a difficult time.  He did not spare my 90 yr uncle , who was in last days with cancer. My uncle wept inconsolably , when these fellows bullied him. 

Subba Raju - GMC LIC agent in Secunderabad . His wife Sudha Rani . P , works in ITC ABD  in Guntur now. I have never seen them , nor did I ever step into their house . But , Subba Raju  ensures to harass me and complain to cops about me. He is another accomplice of this gang. He signs on every complaint letter these guys write on me. I have never interacted with this fellow at all. Subba Raju , I want to ask you , " Did I try to steal your house from you " why is that you are getting involved. You hardly stay here , but still you have grouse against me . You too have 2 daughters who are settled in USA and Australia. Please learn from them , how to treat women . 

I heard every name of animal and reptile being linked with me . I never used to look at anyone directly , because of the  look they used to give me which was only loath . One day a lady Suja Sebastian , another resident who lives here , tells her mother that I look like a lizard . My mom heard this and cried for days.

I used to walk early in the morning at 5.30 AM or 6 AM on the apartment terrace. These 5 bullies , locked the terrace , so that I shouldn't walk , as per Srinivas adepu , looking at my face early in the morning was a curse, Yethish , Subba raju supported this fellow.  I couldn't go out later after 7 am because , the sun is already hot .  My Mom and I had developed severe Vitamin D deficiency , because we couldn't step out for a walk.

I thought I will start 2020 on a fresh note and let go all bygones. But, old habits die hard. On January 3 , 2020, Srinivas adepu, Srinivas gupta , yethish vittal ,   and subba raju again start their dumb charades against me. When I asked them to behave , Kanees abbas started screaming and shouting. I was harassed for 3 weeks without a respite. I developed hypertension and trembling of heart  ever since. 

I went to Apollo and Dr . Col Sitaram has been treating me . Now, I have to take medicines  for BP and trembling of heart every day twice. My medical expense has gone up because of these RWA bullies.

The Government has to monitor , who the RWA members are, They need to come up with an act , so that the residents / weaker ones do not get harassed and traumatized. 

If I have the option and money , I wouldn't have stayed in this apartment or in this place.

The Kind Samaritans of Alliance House who help everyone in times of need are :

Mrs Kanees Abbas

Mr and Mrs Coutinhou 

Mr Merwyn and Valerie 

 Mr Lakshman Naidu and Chandana 

Mr Dominic Chung

Mr Hari Rao .

I was able to sustain in this apartment this long  , just because of these noble and kind souls . They were always  there to help me , whenever I was in need . I thank all these kind hearts for the help they extend , whenever I am in trouble.

Tina - My life experience in school and college- severe Lamellar Ichthyosis.

 My Mom , DR. Victoria Ross , had a tough time raising me. None were there to help her , No one would want to tend to a baby , who was covered in dry black scales all over. The only skin care regime for was to have me lathered up in liquid  paraffin  or white petroleum jelly. My eldest aunt  ( Solomon) was so spiteful , that she used to hide washing detergent , so that my Mom shouldn't wash my clothes or nappies , because she was scared that her  daughter too would get infected with similar skin condition. My aunts  were so superstitious , that they spread rumors that I was born like this , because my Mom exposed herself  during eclipse.

Some said that , I was born like this as a result of curse. My Mom told that I didn't speak till the age of 5. I had a delayed growth. My mom , worked  as a Gynecologist in many hospitals. The house help who was employed to take care of me , in my Mom's absence , never fed me  on time or well, Hence,  I was prone to several deficiencies and severe malnourishment. I had severe visual , hearing and mobility challenges. My bones were very fragile , I had many fractures as a child.

I was a loner as other children never played or interacted with me .I remember 2 dogs and a cat as my best friends during my childhood years. There were times when these animals used to save me from been beaten or stones being thrown at me .

Whenever my mother returned from work , she used to notice many bruises all over my body . she had to wrap bandages all over the bruised area. She said , many times people spat on my face . My Mom never gave up on me.

When it was time for me to go to school, none were ready to accept me in any school. My mother was my teacher . She used to spend all her time taking care of me and teaching me, tending to my wounds and broken spirit.

My mother was troubled a lot by my aunts and their husbands :  So my mother joined the missionaries, St. Ann's of Providence in their group of hospitals. We relocated to a new place. I remember the kind Nuns , took me under their care. I was given all the love and care . My Mom was busy helping and serving the poor travelling all over. St . Ann's congregation took up the responsibility of taking care of me. They were my new extended family.
Sr .Immaculata ( Mother Superior), Sr. Nathlina (late), Sr. Setimia (late), Sr. Alfreda ( late), Sr Cruz Mary , Sr. Rosita , Sr. Jacqueline , Sr. Rosetta . These nuns showed me that humanity still exists. They never cringed touching me or holding me.

I learnt to write , read  and speak well .  I developed a penchant for reading and gardening in the convent , I was raised. I was in the convent chapel choir. I was also tending to the seniors and the destitute in the hospice and infirmary. I was taught , how to love, take care and share . I was transported in a different benevolent world .

I joined a convent school , but it was a terrible time again . I couldn't wash my face and hands often and moisturize them during the day, because by the time I reached home in the evening, my skin was like dry hard wood. My entire body was all in cracks, cuts and deep fissures. In school , many times kids used to push me and run away , my knees were always bleeding and I was in pain always. I resented my school days a lot.

Few teachers were too rough, some boxed my ears which left them cut and bleeding . Some used to beat with a big cane . Once a teacher whacked me on my hand palm that it left a deep gnash and my mom had to put 12 stiches at home. My fingers are deformed and I cannot write for more than 5 minutes. the fingers tips  split so easily that I end up leaving a trail of blood on whatever I touch.
I was highly myopic as a child, my mother realized it only when she saw me struggling to read . I wore spectacles and it was another challenge , because they used to slip from the nose bridge , because of the heavy creams on my face.

I had lot of issues in school , I was highly tolerant to heat and cold. I remember wearing a cardigan in summer inside the class , because I was seated near the window and the cool breeze used to dry my skin fast , causing more cracks and cuts. I was so confused about my skin condition .

I had challenges hearing, the skin used to build up so fast during the day , that my noon time , I had difficulty hearing . I was dyslexic , this was a another big problem. My Mom never insisted that I come 1st .  She used to tell me that , she secretly prayed hard , that I should be able to complete 10th at least . I realized the torture of writing so much in less time . While all the students were writing , I was here writing 4-5 lines, then waiting for the pain to reduce , so that I can at least write the remaining answer. The 10th , board exams were always in March/ April.

I felt  I was inside the oven , when I was writing 10th board exams. I took 2 bottles of ice cold water and poured it all over me , so that I do not get a heat stroke and faint . I really didn't know , how I managed to write all papers . I passed scoring 59% in 10th . Yes, I missed 1st division by 1 mark.

My Mom was very happy that I passed my 10th class. She told me that the college principal refused to let me take science . So, the subjects , I chose was English Literature, world history and political science . I used to read a lot of books, newspaper , magazines . I took part in general knowledge quiz competitions (oral) .  I scored well in them . I loved to listen to music and also used to sing .

Life in College -  I majored in English Literature , World history  and Political Science . The college I studied was almost 10 kms away from home. I had to travel in public transport ( local bus ) . The buses were so crowded , I fainted many times because of heat exhaustion , with the people , fighting , screaming , pushing , jostling left huge scars on me . I was vexed with life , mentally , emotionally , physically  I was drained . Those were the most difficult and terrible years , I don't ever want to remember or think about.

The bullying and ragging in college was terrible . The taunts were even bad. I was constantly red because of continuous over heating . The college never had a proper washroom, that I could wash and apply moisturizer .I used to be the college only for 2 or 3 hours , then I used to rush back home . There were times the bus drivers never stopped seeing me all red . I often ended up walking home taking rest every 10 or 15 minutes. It took 3 to 4 hours to reach home walking from college to home . I never told my mother of my ordeal . But, One day she saw me walking a lonely stretch slowly , then she said that I should stop going to college .

I didn't know , how I finished my graduation. I wrote half papers during annual and remaining half during supplementary , because I couldn't write the papers at a stretch because of my deformed and painful condition of my fingers . Those days , there was no option of a person who could write on my behalf.

As per them or the government , this condition doesn't come in the physical disability category .
Why this discrimination for Ichthyosis affected people . I have a very severe type , but I had a lot of aspirations , but I had to just let go because the physical pain , mobility and visual challenges never allowed me to pursue me dreams.

I had learnt to be content , not complain and accept , which I did . But, please I appeal to people not to take our condition and silence as our weakness and bully or harass us .

I request the school / college authorities to create more place , which allows students  with rare skin conditions to pursue our studies . The teachers and staff should be trained and more awareness about the challenges Ichthyosis affected individuals face.

We, Ichthyosis affected need people to understand us , support us and have  lots of patience when they interact with us.