By Helen Faith, scleroderma, Philippines, December 3, 2020

I am Faith,19,a typical bubbly, happy and a goal-oriented young lady. I have so much in my mind; dreaming of becoming somebody, thinking of a beautiful future ahead of me. I am always persistent and determined in everything that I do in life. I have received numerous awards in school for being a consistent honor student. I am optimistic that when you put effort and believe in yourself you will achieve what you want in life.

It feels like everything fits into places, not until I discovered something. It broke me, I was shattered! I was in fear!


I was diagnosed for having Systemic Sclerosis or Scleroderma February 2020.

We were preparing during that time for my uncles 60th birthday as well as for our family reunion, when my relatives specifically my cousins and aunt noticed the dark pigmentations on my skin, also seem that I have undergone weight loss. They were asking if I am okay, because they thought that I wasn't feeling  normal. They even touched my skin and found out that it was thicker and harder compare to their skin. I told them that I am fine, and maybe the cause of the darkness of  my skin was that of an expired lotion I applied and overexposure to the scorching sun, and my weight loss, maybe because of a stressful life in school during those time.

I have noticed  several changes in my body, so we decided to consult  a dermatologist. It was a relief then in my part because it was just a skin allergy. I was prescribed some cream, ointments and soap for treatment.

My aunt, a nurse, kept on telling me that something is  wrong, that the changes in me physically was not normal anymore. We came to a decision, to seek for a second opinion. This time, another dermatologist and an internal medicine specialist. After the doctor had examined me, I had this question in mind, why she needed to talk to my aunt privately? I was suspicious at that moment, thinking I am ill. We were told that I will be referred to a Rheumatologist and everything will be explained.

Out of my curiosity, I opened the paper with the result of my check-up and began doing my research. I also looked for pictures of people having the same disease as I have, since it was written on the medical result.

I was horrified! Yet, I managed to calm myself, able to convince, that everything is still and will be alright. I even told myself, the diagnosis was wrong. What I saw and read were exaggerations. I experienced shortness of breathing, and I thought it was just normal since I have asthma, the dark pigmentations on my skin were due to sun exposure and again, I was having a stressful time in my studies so I lose weight.

On February 15,2020,we headed to the clinic another check-up. I noticed that most of the patients were elderly. I wondered why the assistant told me if I could still write.
 I had a lot of questions in mind, since I was the first to arrive yet I was the last to be catered by the doctor. She handed me a box of tissue paper, as if she knew I am going to cry.
Boom! I was ATLAS for a moment! I felt like the world is on my shoulder. I cried as if I was torn into pieces. All that I read and saw were not exaggerations...they're all true!

Rare disease….Autoimmune...a type of Scleroderma which causes the thickening of the tissues including the internal organs.
Causes? Unknown? Environmental Factors or Genetics?
I was devastated because the only thing we could do is to prevent the severity but not the disease itself.

I was required to have medical laboratories like 2D echo, X-ray for Chest PAL, Pulmonary Function Test, Urinalysis, blood samples for my CBC with Platelet, creatinine, ESR, and SGPT in order to know what is my condition and told to come back with the results.

After a week,  I have already a restriction in my lungs and I have infections since my ESR results seem higher compare to the normal one. I was given medicines for maintenance;   5 mg Prednisone, 20 mg Benaprost Dorner, 200 mg   Hydroxychloroquine and have to take multi-vitamins everyday. Have a healthy lifestyle so, to say. 

I am okay, I kept telling myself!
But no, the symptoms are real!
For a month, I cried and cried as I go to bed. The high-spirited me, turned into a low and dark cloud like, ready to fall and pour its rain. All I wanted was to wake up and consider it as the worst dream I had.
Why me? What have I done for me to suffer like this?

I fear not to continue what I have started. My dreams for my family, for my friends. I still want to get old together with the people dear to me. I’m still young. Why?

I came back to school as if nothing happened. But there's still more. Another challenge that threatened the whole world. The COVID19-Pandemic.I was then afraid again because I know I am one of the most vulnerable. And by seeing its effect and by looking at the news,I was threatened. It was difficult for me because everything changes in a blink of an eye. Health protocols should be observed, and with its increasing number of affected individuals worldwide who would not be afraid of. My medicines were out of stock, and I need it stay protected.

I was experiencing severe muscle and joint pains though I continued to take my medications, there were times that I could not take it because it is unavailable. So, my mom would make home remedy to ease the pain. But still it wont stop, until I became bedridden. I couldn't stand by myself. Then I cried every night again. As my condition worsens, I got admitted to the hospital.

We have nothing to do, but to wait for 12 excruciating hours before heading to a private room.

Turning Point!
The 5 days I spent in the hospital had given a lot of realizations. Although the treatment and medications are on going. I came to get nearer to God. As every morning, I listened to worship songs and I felt I was calmed. I told myself then, that I would never go back to the hospital. I started to change my routines. More than being health conscious, I always thank God for giving me another chance to live. And with His grace, my condition became better.

Having a positive outlook in life brings too much goodness. I always believe that everything happens with a purpose. I may not understand it fully for now, but in God's time I will. I could have not enjoyed the life I have today if not with my parents who selflessly made all things possible, to the doctors and nurses, attendants, my friends and the people who prayed for me, THANK YOU is never enough. As I embrace SCLERODERMA.I am more than ready to fight this battle!

Let us spread love and kindness!

As I was named FAITH,I will walk upon it!
 I am Faith, and….
This is my story!


Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.