My Struggle With Gilbert’s Syndrome

Have you heard of it? Gilbert’s syndrome? 

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I had not either until I was diagnosed with it 12 years ago. So what is Gilbert’s Syndrome? Is it contagious? Will I die from it? These were all questions that ran through my head when I was diagnosed.

The Mayo Clinic’s website states, “Gilbert’s (zheel-BAYRS) syndrome is a common, harmless liver condition in which the liver doesn’t properly process bilirubin. … If you have Gilbert’s syndrome — also known as constitutional hepatic dysfunction and familial nonhemolytic jaundice — you’re born with the condition as a result of an inherited gene mutation.”

The NIH states, “Gilbert syndrome is a relatively mild condition characterized by periods of elevated levels of a toxic substance called bilirubin in the blood (hyperbilirubinemia).”

So lets discuss this for a moment. When I was diagnosed, I was told that I was born with this syndrome and that it would not affect anything except the whites of my eyes would turn yellow. I was also told that there was nothing I can do to get rid of this condition. While some of this is true. Some is not.

They are right. Gilbert’s Syndrome is a liver condition where the bilirubin in my body does not flush out properly through my liver and kidneys. This in turn causes my bilirubin to be elevated, which will give me jaundice skin and eyes.

More Than UsThey are also right that this is an inherited gene. I was born with this. I also had genetic testing done when I was pregnant with my first child to make sure she would not get the syndrome also. Come to find out that both parents have to have the “broken” gene in order to pass it to children. This syndrome is common in certain ancestries, which I have. However, my husband did not have the “broken” gene and therefore my children would not get the condition. Whew!

I will tell you where they are wrong. This is not a “harmless liver condition”. It is not just a “mild” thing to deal with.

Think about it. Above I quoted the NIH stating that Gilbert’s Syndrome is a condition “characterized by periods of elevated levels of a toxic substance called bilirubin in the blood.” Toxic substance? Really? Because anything toxic is harmless.

Gilbert’s Syndrome falls in the same liver condition category as the following:

  • Acute or chronic hepatitis (commonly viral [Hepatitis A, B, C, D, E] or alcohol related),
  • Cirrhosis (caused by various conditions),
  • Drugs or other toxins,
  • Crigler-Najjar syndrome,
  • Autoimmune disorders,
  • and Liver cancer.

Do any of those conditions seam harmless? No. It is because they are not. Hepatitis is inflammation in the liver and can make you feel like you have the flu. Cirrhosis is loss of liver cells and scarring of liver tissue. This can cause symptoms like weakness, loss of appetite, easy bruising, yellowing of the skin (jaundice), itching, and fatigue. In CriglerNajjar syndrome, “jaundice is apparent at birth or in infancy. Severe unconjugated hyperbilirubinemia can lead to a condition called kernicterus, which is a form of brain damage caused by the accumulation of unconjugated bilirubin in the brain and nerve tissues.” Autoimmune disorders attach your healthy cells and Liver cancer is just that, CANCER.

More Than UsI can tell you that over my short lifetime here on this earth, I have suffered from several symptoms due to Gilbert’s Syndrome. I have had the yellow skin and eyes. I have also suffered from the following:

  • Darkening of urine, sometimes to a brownish tone
  • Pale, clay-colored stools
  • Extreme fatigue
  • Loss of appetite
  • Abdominal pain
  • Heartburn
  • Constipation
  • Bloating
  • Swelling of abdomen

On top of these, I also suffer from low blood pressure, acute heart palpitations, eczema, dental issues (not cavities), anxiety, and hormone imbalances.

I am not here to complain about my condition. I am here to state the fact that this is not a harmless condition. Those of us that have been diagnosed have a multitude of symptoms that can not be explained.

I, personally, have found ways to cope with my symptoms. When I get yellow or jaundice, I will drink water with lemon and Apple Cider Vinegar (ACV) in it. The ACV also helps with the heartburn, which I found out was due to low stomach acid. Pink Himalayan Sea Salt helps with my low blood pressure and heart palpitations. My LDM-100 and Monolaurin help with the loss of appetite, constipation, and bloating. I also use a pure Hemp CBD oil that helps with multiple things; such as inflammation, swelling, pain, eczema, anxiety, and hormone imbalances.

More Than UsAll of this on top of eating healthy and staying hydrated has helped me live with Gilbert Syndrome. However, I still get flare ups. I still have bad days. Because there is no cure and this is hereditary, I will have to live like this for the rest of my life.

Instead of dwelling on the bad or the pain, I have decided to work hard to feel as good as I can and enjoy my life. I do not want this to bring me or my family down.

So this has been my struggle with Gilbert’s syndrome. Let me know your health struggles. What do you have to cope with everyday? How are you coping and is it working? 

Please note: I am not a medical doctor and I am not here to treat or diagnose any illnesses. Please see your health care provider for any of your medical needs and do your research. The only way I found out was through blood testing that I had done through my health care provider.

 

Until next time…

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About Jessica Repenning

Jessica is learning how to live a healthier and wholesome lifestyle. Come and learn with her on this journey that she has embarked on.

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