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.