Dental problems are among my most difficult aHUS comorbidities

Patients with kidney disease can experience severe oral issues

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by Shalana Jordan |

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Pain shoots through my jaw and into my sinuses and eyes. The ache throbs to the rhythm of my heart like a drum getting louder and louder. Decay forces me to cover my mouth when I laugh. I never lean in close to a friend to whisper because of bad breath I can’t control. These are all dental issues I deal with every day as a comorbidity of my rare chronic illness.

My dental health has been rapidly declining since I nearly died of a rare disease called atypical hemolytic uremic syndrome (aHUS). This set of problems is one of my most embarrassing symptoms, and one of the hardest to talk about.

Biting into a crisp, sweet apple is something I once took for granted and now miss dearly. Laughing out loud with confidence was also hard to let go.

aHUS turned my life upside down in September 2020. The disease causes hemolytic anemia and thrombocytopenia (low platelet count), which sent me into liver failure and end-stage renal disease (ESRD). After months of various treatments, including plasmapheresis, dialysis, blood transfusions, surgeries, and chemotherapy, my health improved to stage 4 chronic kidney disease (CKD). But despite my health stabilizing to what I call my “new normal,” I’m still chronically ill.

Chemotherapy helps control the deadliest symptoms of my disease by keeping my immune system mostly inactive. But CKD causes a slew of issues that affect every facet of my day-to-day life. The decline of my dental health is one of the worst issues I deal with.

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The effects are widespread and daunting

The aHUS Alliance reports that aHUS patients with CKD experience higher rates of periodontitis than the general public. Furthermore, aHUS patients with ESRD experience more severe oral issues, which can include caries, periodontitis, dry mouth, and poor oral hygiene. I constantly experience all of these. My oral hygiene wasn’t great during the first half of my life, so I went into all of this stage at a disadvantage.

When I eat, I have to be careful when I bite into things because I risk breaking off pieces of my teeth, which would further damage my deteriorating gumline and can cause excessive bleeding there. I have to cut up many foods, including pizza, apples, sandwiches, and more. There are several foods I won’t even eat in public because I can’t bite into them like a normal person.

With CKD, waste removal is impaired, which can cause a buildup of waste in a patient’s blood. That contributes to bacteria growth, bad breath, and a metallic taste in the mouth, to name a few problems. These dental issues also increase the risk of infections, which are not only bad for one’s health, but can also trigger an aHUS relapse.

Increased inflammation can also ramp up an immune response, which can trigger an aHUS relapse. For me, inflammation is the symptom that causes the most dental pain. But because of my bad kidney and liver health, I’m not allowed to take anti-inflammatory medications, including ibuprofen. So if my teeth or gums hurt, I just have to deal with it.

The scariest part of this issue is that it jeopardizes my chance of receiving a kidney transplant. My kidney function hovers between 16% and 22% eGFR (estimated glomerular filtration rate, a measure of kidney function). I had a scare last week when my kidney function dropped to 14% eGFR. Doctors typically want to start dialysis when a patient’s kidney function goes below 15%. Impaired kidney function has a huge effect on my life, and I would benefit from a transplant.

But my dental health is so bad that it disqualifies me from the transplant list, as Davita Kidney Care notes. Potential recipients are given a complete oral exam to rule out issues there, as well as constant bacterial infections that would be a potential complication. Hopefully, one day I can have my teeth replaced to address this problem.

The experience makes me appreciate my molars, which are in better shape then my front teeth. I’m also able to use this experience as a teaching moment for my children. There’s no better way for them to learn the importance of good dental hygiene than by seeing my struggles every day.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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