Sharing it with the world
The modern world is full of new and exciting ways to communicate with people, and blogging and vlogging has since become a huge part of society. This gives people from all over the world the chance to talk about their life, connect with others who are going through similar situations, and to discuss matters that are close to their heart. From this, an incredible new generation of bloggers has formed, and these people are ready and willing to talk about their mental and physical illnesses. Stephanie Matto is one of those bloggers.
The rare condition
Stephanie Matto is a popular blogger and vlogger who splits her time between Connecticut in the United States and the Czech Republic. Over the years, the 27-year-old has managed to win over fans from across the world with her truthful YouTube videos and blog posts, and these fans always want to keep up with her life. However, when they heard the news that Stephanie had been diagnosed with a rare illness, they couldn’t believe their ears. They were even more surprised when they heard about the injections she was taking to alleviate her symptoms…
The blogger in question
To understand the truly bizarre nature of this story, we need to learn a little more about the blogger in question. With a whopping 32,000 followers on Instagram, over 10,000 on Twitter, and 320,000 subscribers on YouTube, it’s fair to say that “Stepanka” is pretty darn famous in her own right. However, she never envisioned that she would become a blogger for a living. As a young adult, she tried to make it in the world of acting, and would constantly travel between New York and LA to score movie or TV roles.
Not working out
Sadly, Stephanie’s acting career didn’t really work out, and she only bagged herself one acting role in 2009. Despite her path to stardom crumbling at her feet, Stephanie was determined to make a name for herself and show the world what she was made of. So, in 2012, she created her “Stepanka” YouTube page, and she has since racked up more than 55 million views on her videos. Since then, she has also created her own little slice of the internet where she can write about her life experiences.
Life in 2016
In September 2018, Stephanie decided to share a new development in her life with the world. In an emotional blog post, she wanted to let her fans know of the struggle she has been going through since July 2016. This was the month that she began to notice that something wasn’t quite right with her body. As she developed worrying symptoms, she forced herself to avoid self-diagnosing herself on the internet. It was her summer, and she wanted to enjoy it for as long as possible without having to think about her health.
Despite her symptoms, Stephanie decided to go ahead with her summer plans and visit her family back home in the Czech Republic. Yet, it was during this trip that she realized her symptoms were getting worse. She would wake up with horrific bruises all over her body, and she would struggle to walk up small flights of stairs without losing her breath and struggling to breathe. Although she tried to ignore what was going on with her body, she eventually couldn’t avoid it any longer. She needed to see a doctor.
Perhaps the most alarming symptom of all was the bruising. At the slightest touch, Stephanie’s skin would turn black and blue, and leave her with a huge bruise that would take weeks to settle down. She has noted that her “most intense bruise” came after she carried her grocery shopping home with her. Although she was simply carrying them with her hands, she looked down at them just a few hours later and saw that they were completely covered in blue-green bruises. It was as if the blood had burst from her veins.
A trip to the doctor
When she returned to her home in Connecticut, Stephanie booked an appointment with her doctor to see what was really going with her health. As she wondered what could be the matter with her, she began to wonder whether she was suffering from a deficiency of some sorts. Did she need more vitamin C in her body? Was she running low on iron? Stephanie had her blood work done, and she waited on tenterhooks for the result. However, she never expected the frantic phone call she received the next morning…
Rushing to the ER
The phlebotomist got hold of Stephanie after testing her blood, and she could immediately tell that the blogger was in danger. Her blood levels were far from normal, and they seemed to be in a critical condition. The phlebotomist tried not the worry Stephanie, but she knew that she had to get to her nearest ER straight away. This wasn’t just a simple matter of bad health, this was something much more serious than that, and Stephanie’s life was on the line. Naturally, Stephanie immediately followed their direction.
A lengthy stay
Because Stephanie thought that she would be in the ER for just a matter of hours, she hurried a few personal items together and a few items of clothing. She also waved goodbye to her dog and assumed that she would return to look after him that same evening. Instead, Stephanie was forced to stay in the hospital for almost a whole week, as her stumped doctors tried to make sense of what was going on in Stephanie’s body. They had never seen anything like it before, and they had no clue what she was suffering from.
A host of blood transfusions
Although the doctors were still stumped by Stephanie’s condition, they knew that her bloodwork was far from normal. So, she received blood transfusion after blood transfusion, and her stats were taken every single day to see if there were any changes. Before too long, the doctors were able to come to a devastating diagnosis. They knew exactly what was causing Stephanie’s bruising, her fatigue, and her sickness, and they knew that there was no cure. All there is is a risky and bizarre treatment that may or may not work…
As Stephanie lay in her hospital bed, she was finally given a diagnosis that would explain her symptoms. Thanks to a rare disorder with her bone marrow, Stephanie was diagnosed with aplastic anemia. This disorder means that her bone marrow and her hematopoietic stem cells are all badly damaged and can’t work in the way that they should. In turn, she is deficient in red blood cells, white blood cells, and her platelets. As the news sunk in, Stephanie was also told the devastating news that there is no cure for aplastic anemia.
A silver lining
Stephanie was devastated to hear that her symptoms had actually been something much more sinister, but her doctors weren’t giving up. A silver lining to her condition was that, despite there being no cure, there were numerous treatments for aplastic anemia. Most notably, she would be able to maintain her platelet and blood cell levels up to date and monitored by going into the ER for blood transfusions every other day. Although this wasn’t something she wanted to do for the rest of her life, she knew she had to to survive.
As Stephanie made her way to and from the hospital on a regular basis, she soon became in tune with her own body. She could feel when her platelets and her blood levels were running low, and she could immediately feel the change in her body when she went home after her transfusion. However, Stephanie also knew that these transfusions couldn’t be a long-term solution. Because of this, she jumped at the news that her doctor had heard of a new experimental treatment surrounding her diagnosis. She had a good feeling about it.
A new treatment
Although the doctor couldn’t tell Stephanie a lot about the new experimental treatment, he had heard that many patients with her condition had made remarkable progress while trying it out. There was one catch, though. The treatment was only available in a special clinic in Maryland – a whopping six hours away from her home. In the end, Stephanie knew that it was a risk worth taking. So, she and her mom made the hefty drive in the hope of better health, and in the hope of recovery from her debilitating diagnosis.
So, what was this bizarre treatment? After suffering with intense bruising, breathlessness and fatigue since 2016, Stephanie didn’t bat an eyelid when the medical professionals told her that they would be injecting horse proteins into her body. By this point, she would do anything to feel normal again. For this new treatment, she would need to stay in hospital for a month, being injected with this horse protein every day to ensure that it worked its magic. The science was there, but she wanted to see the results for herself.
An autoimmune reaction
The aim of the horse protein is to induce an autoimmune reaction that would shut down her usual immune system. The reason Stephanie had such low levels of blood cells and platelets was because her body was actively attacking them. To stop that from happening, these injections would completely immobilize her immune system and start afresh from her bone marrow. The hope was that her bone marrow would be forced to produce these platelets, and allow her to live a normal life again. Yet, would it work?
A lengthy battle
Although Stephanie was discharged from the clinic after a month, that wasn’t the end of her journey. Alongside the injections, she also had to continue making her way to the ER to have regular blood transfusions – and she began to wonder whether the treatment was really worth it. Amazingly, the process finally began to show results after four months, and Stephanie was given news that would change her life for the better. Finally, she had control of her body again, and her bone marrow had naturally produced a small level of blood cells.
Up and down
The news that her blood levels were rising was overwhelming, but Stephanie soon realized that it wouldn’t always be an upward battle. After her bone marrow produced blood cells on its own, she didn’t have to have any more blood transfusions. In fact, she was transfusion-free for a whopping four months before she was pulled back down to earth again. Her levels had dropped, and she once again had to have a transfusion to get them back to a normal level. Her spirits dropped as hard as her blood levels.
A possible transplant?
As Stephanie made her way back to the hospital on a regular basis, she and her doctor began to think of new and improved options. While many people with her condition would be eligible for a bone marrow transplant, there is nobody on the transplant register that is a match for Stephanie. This means that she is left with no choice. Either she continues to try new autoimmune treatments, or she spends the rest of her days in the hospital getting regular blood transfusions. This is not an option for Stephanie.
Using her platform
Although she has been faced with tough decisions and a terrible fate, Stephanie is not giving up. Instead, she is now using her platform on social media and her blogging channels to try and give her a second chance at life. She has now written numerous blogs about her experience, filmed countless videos, and is encouraging all of her viewers to sign up as a donor. If she can find a bone marrow match, she could be given a chance to survive this terrible and rare disease. We hope she finds it.