A couple of days before her 7th birthday Kitty was diagnosed with Nephrotic Syndrome, the cause of which is unknown.
In NS the immune system attacks the kidneys, Kitty’s has failed to respond to standard treatments, so we took her to Great Ormond Street, who performed a biopsy on her kidney which showed she has a rare aggressive form of NS, called focal segmental glomeruli sclerosis (FSGS).
FSGS is sometimes treatable, but not curable, it is a chronic disease and ultimately unless the right treatment can be found, it will lead to kidney failure. That may not be the end, because the underlying cause is unknown the FSGS can come back in the transplanted kidney sometimes within hours.
Kitty has had to take a range of really foul medicines and chemo for 8 months trying to put her in to remission, none of which have worked yet, and have left her with virtually no immune system. Chicken pox can land her in hospital for weeks, and worse, but we are hopeful that by funding research a cause and ultimately a cure can be found.
Because it is a
rare disease, and ultimately not enough people die from NS for there to
be much in the way of NHS funding or drug company research. Most of the
treatments out there are happy accidents from drugs used to treat other
auto immune diseases like arthritis.
NeST is the Nephrotic Syndrome Trust, that funds research completed by Bristol University Hospital in to all forms of NS, they work closely with centres around the world and provide much needed support for the patients and families.
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Literally Kitty is one in a million.