Yes, women can absolutely get Alport Syndrome.
In fact, the most common form of the disease (X-linked Alport Syndrome) actually affects twice as many women as men. However, there has been a long-standing medical myth that women are only “carriers” who don’t get sick.
We now know this is incorrect; while symptoms are often milder in women, they can still experience serious kidney and hearing issues.
Because Alport Syndrome is usually tied to the X chromosome, women (who have two X chromosomes) typically have a “backup” healthy gene that offsets the mutated one. Men (who have one X and one Y) do not have this backup, which is why their symptoms usually appear earlier and are more severe.
| Feature | X-Linked (Most Common) | Autosomal Recessive (Rare) |
| In Women | Symptoms vary widely. Most have blood in their urine (hematuria). Some never progress further, but 15–30% develop kidney failure by age 60. | Affects women just as severely as men. Kidney failure often occurs by the teens or 20s. |
| In Men | Nearly all develop kidney failure, often by their 20s or 30s. | Equal severity to women; early kidney failure is typical. |
A process called X-inactivation (or “lyonisation”) determines how a woman is affected. In every cell, one X chromosome is randomly turned off.
If most of the “healthy” X chromosomes are turned off in the kidneys, a woman may have severe symptoms similar to a man.
If most of the “mutated” X chromosomes are turned off, she may have no symptoms at all other than microscopic blood in her urine.
Haematuria: Blood in the urine (often invisible to the eye but detectable by a doctor).
Proteinuria: Protein in the urine, which is often the first sign that the kidneys are under stress.
Hearing Loss: Typically a loss of high-pitched sounds, often appearing in middle age for women.
Eye Issues: Specifically a “cone-shaped” lens (lenticonus) or flecks on the retina.
If you have Alport Syndrome, or a family history of Alport Syndrome, it is important to be monitored by a nephrologist (kidney specialist).
Early treatment with blood pressure (and other) medication (like ACE inhibitors, and SGLT2is) can significantly delay the onset of kidney failure in both men and women.
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