A MCD Diagnosis Story: Why Listening to Your Body is so Critical

Elizabeth Dravis is a PhD student studying public health, a medical professional, a runner, and a mother. She also is a minimal change disease (MCD) patient. This is her diagnosis story.

Elizabeth started experiencing severe fatigue for no apparent reason. Since it was the beginning of the year she thought she perhaps just needed rest after the bustling holidays. But things only got worse as time went on, and when she fainted, she knew something was serious.

She was admitted to the ICU and monitored for potential cardiac issues. Her care team found she had critically low levels of sodium, or severe hyponatremia. She also had very low albumin levels as protein was excreted excessively through the kidneys and urine. She was also still facing fatigue in addition to weight gain and swelling. Moving from their initial thoughts of a cardiac issue, her care team started to see how strong the clues were for a kidney issue.

She was ultimately diagnosed with minimal change disease (MCD) after a kidney biopsy.

MCD

MCD is a rare condition which often appears very suddenly. It is a glomerulonephritis kidney disease where the filtering function of the kidneys fails and more is filtered out than should be.

Less than 1% of those diagnosed with kidney disease have MCD. Further, it’s much more common in young adults than it is with older adults.

Thankfully, there are treatments for this condition. Corticosteroids such as prednisone can lead to complete remission. Most patients don’t face any long-term symptoms, and their lives can continue as normal.

Elizabeth’s Healing

Elizabeth was thankful to have a skilled team of specialists from many disciplines. She had care from cardiology, critical care, nephrology, rheumatology, and endocrinology because so many of her body’s systems seemed to be affected.

The team could tell there were signs of nephrotic syndrome, which is a kidney disorder where large amounts of protein are lost. This causes the body to retain fluid, leading to swelling.

Elizabeth’s physicians first brought up her sodium levels so that a kidney biopsy could be taken safely. This kidney biopsy ultimately led to her MCD diagnosis. The diagnosis explained every symptom.

Elizabeth was treated with prednisone for about 16 weeks at a tapering dose. She has done extremely well; she no longer has protein in her urine, she has stopped retaining fluid, and her blood pressure is now normal. Doctors consider her to be in complete remission.

Now Elizabeth is working to bring awareness to others who may not have heard of this condition or know what to look out for. She wants to encourage people to go to the doctor when things feel off, and not to dismiss their symptoms even if they don’t initially seem so severe.

It’s essential to listen to your own body. After all, you know it best.

You can read more about Elizabeth’s diagnosis and healing story here.