“Verily, With Hardship Comes Ease”

The story of Sareena

My name is Sareena. I was born on September 21, 1995. I was diagnosed with severe Factor VII Deficiency when I was two months old. I am now 28 years old.

My journey with Factor VII Deficiency began about two days after I was born when I started bleeding from my tongue. My parents were very concerned as this was something very unusual to occur. I continued bleeding from my tongue after every feed a few weeks later. When my parents told my pediatrician about this, he said to just keep watching and didn’t seem too concerned. My parents brought me back to the hospital, and doctors ran various types of blood tests. On October 17, 1995, I was diagnosed with severe Factor VII Deficiency- a rare bleeding disorder which occurs in approximately 2 in a million people. In this disorder, people generally have issues with clotting. Factor VII deficiency is caused by mutations of the F7 gene and is inherited as an autosomal recessive disorder.

I began receiving my infusion, eptacog alfa, for my bleeding disorder about a month after I was born.
A little over a month later, I was brought to the hospital again as I was vomiting, lethargic, and screaming in pain. I had a CT scan done and a blood clot was found in my fourth ventricle. It was discovered that I had hydrocephalus, a neurological disorder caused by an abnormal buildup of fluid in the ventricles within the brain, and I was having a cerebral hemorrhage, or a brain bleed.

On December 8, 1995, I had a central line placed in my chest as nurses had difficulty finding my veins and also due to the fact that I was going to be given Factor once a day for at least 6 months.

Five days after my central line was put in, another CT scan was performed and showed that I was getting hydrocephalus again. On December 13, 1995, I had a VP shunt, a thin plastic tube that helps drain extra fluid from the brain, placed in my brain.

About four months later, another CT scan was performed and showed I was getting hydrocephalus again. My parents and I met with a Neurosurgeon where it was decided that I need to get my shunt replaced as the previous one was not working. April 30th, 1996, I had my shunt replaced.

About three months later on July 14th, I was back in the hospital for another shunt revision as I was still showing symptoms of hydrocephalus.

About a month after I came home on August 22nd, my central line bursted. My parents brought me to the ER. The pediatric surgeon tried to repair it, but it wouldn’t flush. Eventually, the central line was replaced a few days later.

September 8, 1996, I began throwing up and was very lethargic. My parents took me to the hospital and I had a CT scan done which showed my ventricles were enlarged. I had a third shunt revision. I ended up having multiple shunt revisions before my first birthday in September 1996. Thankfully, the shunt stayed intact for about another 15 years until March 2011, when I had two more shunt revisions.

I also had seizures for about five years from around 2004-2009 due to all of the brain surgeries I had as a baby. I do not have much memory of these seizures, but my parents told me most of them used to occur late at night, and I usually would fall asleep after having them from exhaustion.

I had many internal bleeds when I was a child, most of them in my hamstrings because my muscles were so tight. I used to meet with a physical therapist, and she used to teach me different exercises to loosen my muscles so that bleeds would occur less often.

I have a passport in my chest- a small disk under my skin which is accessed via a needle a few times a week to receive my eptacog alfa infusion. This has been replaced a few times as the previous ones either stopped working over time or the skin on top became completely damaged. This passport is used to receive my eptacog alfa medication for my Factor VII Deficiency. I receive this medication every other day or more frequently if needed.

I have always tried to keep a positive outlook towards life despite any obstacles that may have come my way. I never like using my rare disease as an excuse, but rather I like seeing it as an opportunity to improve myself everyday, and to prove to myself that I can do anything I can set my mind to. I couldn’t have had a bigger support system than my family- especially my parents- the past 28 years. They have been by my side through thick and thin, and they taught me how to be strong.

Many times when I am in pain or have any sort of obstacle, I think about the Quranic verse “Verily, with hardship comes ease.” This verse helped me so many times in my life as it brought a calmness to my heart, and helped ensure that along with every hardship, there surely will be ease. I have a necklace with this verse written in Arabic as I love it so much.

I am extremely grateful to God, my family, as well as anyone else who has supported me in this journey in any way. I couldn’t have done it without their love and prayers. I can’t wait to see what exciting adventures lie ahead.

To learn more about Factor VII Deficiency, visit https://rarediseases.org/rare-diseases/factor-vii-deficiency/