Hi, My name is Ariadne Popma & I am a Mitochondrial Disease Warrior with multiple Rare Diseases. The type of Mitochondrial Disease I have is called SCAD (Short-chain acyl-CoA dehydrogenase) Deficiency with abnormal acylcarnitines (conformed through skin biopsy) & I have Polygenic MELAS (Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes) - like Syndrome.
Having Mito is hard, but I do NOT let my disease define me! I stay positive and I want to help others fighting this disease too. I want to be part of the cure, NOT a victim and that's the reason why I created The Mito Life - Living Life as Zebras & Butterflies, so I can make difference by spreading awareness about Mito through pictures and videos that I make along with fundraising.
We all have 2 choices in life. We can either sit around and whine about our illness or we can make something beautiful out of it. I choose to get up, stand up, and be a voice for those who don't have one. I want to help find the cure for the future generations, even if a cure doesn't come in my life time. I don't want the kids that are going to be born with mito in the future to have to suffer.
Having Mito is hard, but I do NOT let my disease define me! I stay positive and I want to help others fighting this disease too. I want to be part of the cure, NOT a victim and that's the reason why I created The Mito Life - Living Life as Zebras & Butterflies, so I can make difference by spreading awareness about Mito through pictures and videos that I make along with fundraising.
We all have 2 choices in life. We can either sit around and whine about our illness or we can make something beautiful out of it. I choose to get up, stand up, and be a voice for those who don't have one. I want to help find the cure for the future generations, even if a cure doesn't come in my life time. I don't want the kids that are going to be born with mito in the future to have to suffer.
THIS IS WHAT IT'S LIKE HAVING MITOCHONDRIAL DISEASE
Imagine your body being poisoned, but not by a drug...but by your own body and there's nothing you can do about it.
Imagine feeling weak and tired all the time, because your body doesn't have the energy it needs to grow and sustain life properly.
Imagine a year ago, 6 months ago, a month ago, a week ago, or even a day ago where you were able to do things you enjoyed, but now you can't because your muscles are too weak to the point that you lost your ability to walk and or use your arms. Now imagine what its like for the sibling of that mito patient where they used to be able to play all the time with their sibling, but now they can't because the mito sibling is always at the hospital for doctors appointments, tests, and hospitalizations. Now imagine what it's like to not understand what is happening to your siblings' body.
Imagine not knowing what you are doing or where you are. This is what we call "Mito fog" (Brain fog).
Imagine what it's like knowing there is NO real treatment and NO cure for this Disease.... It's like being told you have cancer. Now Imagine what its like for the parents knowing that there is nothing they can do to help their child as they watch the disease take over their body.
Imagine what its like fighting a disease that nobody knows about, yet this disease KILLS MORE KIDS THEN ALL CHILDHOOD CANCERS COMBINED. Did I mention only a handful of doctors know about this disease called Mito?....It makes you feel like you are ALONE!
Imagine what its like finding out wrong treatment and diet can make your condition worse and then imagine knowing all these years your symptoms were written off as something else and the damage can not be reversed.
Imagine what it's like watching other kids that you meet online or in person die from the same disease, and knowing some of them can not even walk, talk, see, hear, breathe, eat and or do anything on their own. You can't help but wonder I'm a next, is my best friend next, is my sibling next.
THIS IS MITOCHONDRIAL DISEASE...
Mitochondrial Disease or Mito for short s a LIFE-THREATENING, PROGRESSIVE, DEGENERATIVE, & DEBILITATING DISEASE!
Imagine your body being poisoned, but not by a drug...but by your own body and there's nothing you can do about it.
Imagine feeling weak and tired all the time, because your body doesn't have the energy it needs to grow and sustain life properly.
Imagine a year ago, 6 months ago, a month ago, a week ago, or even a day ago where you were able to do things you enjoyed, but now you can't because your muscles are too weak to the point that you lost your ability to walk and or use your arms. Now imagine what its like for the sibling of that mito patient where they used to be able to play all the time with their sibling, but now they can't because the mito sibling is always at the hospital for doctors appointments, tests, and hospitalizations. Now imagine what it's like to not understand what is happening to your siblings' body.
Imagine not knowing what you are doing or where you are. This is what we call "Mito fog" (Brain fog).
Imagine what it's like knowing there is NO real treatment and NO cure for this Disease.... It's like being told you have cancer. Now Imagine what its like for the parents knowing that there is nothing they can do to help their child as they watch the disease take over their body.
Imagine what its like fighting a disease that nobody knows about, yet this disease KILLS MORE KIDS THEN ALL CHILDHOOD CANCERS COMBINED. Did I mention only a handful of doctors know about this disease called Mito?....It makes you feel like you are ALONE!
Imagine what its like finding out wrong treatment and diet can make your condition worse and then imagine knowing all these years your symptoms were written off as something else and the damage can not be reversed.
Imagine what it's like watching other kids that you meet online or in person die from the same disease, and knowing some of them can not even walk, talk, see, hear, breathe, eat and or do anything on their own. You can't help but wonder I'm a next, is my best friend next, is my sibling next.
THIS IS MITOCHONDRIAL DISEASE...
Mitochondrial Disease or Mito for short s a LIFE-THREATENING, PROGRESSIVE, DEGENERATIVE, & DEBILITATING DISEASE!