In March 2021 our world as a family turned upside down. Our bright,
outgoing, funny, independent daughter got extremely poorly and no one could
tell us why, how and what was wrong with her.

It all started with school anxiety. Noises in the classroom became too
much for Ebony, she described it as everything closing in on her and making her
feel hot. Shortly after she got severe anxiety, debilitating panic attacks, she
started to struggle to get her words out  and unknown to us at that time was suffering
with severe OCD, with many more symptoms. Her symptoms terrifyingly increased
over the next few months, she went nights on end without sleeping, food made
her feel sick, she started hallucinating and she couldn’t bear the pain in her
head, she cried and screamed for help and for us to take her to the hospital. ‘
I can’t do it anymore’ she used to cry over and over again. There were visits to
A&E, many calls in the early hours of the morning to 111 and even more
calls to our local GP, begging for help for my daughter, but still things got
much worse and no help was provided. Ebony was suffering beyond words and as a
mum I didn’t know how to help her.

Over a year on and we now know Ebony has PANDAS. PANDAS is short for Paediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcal Infections. In simple terms, Ebony’s antibodies attack her
healthy cells instead of an infection, which causes severe inflammation on the
brain, that then causes the child to become extremely poorly. Ebony received
her diagnosis privately, following blood tests in November 2021 as we couldn’t
get help from the NHS. Finding out what was wrong with Ebony was one of the hardest
things we’ve ever had to do, it took months and months of research, until we
finally found the PANDAS Facebook support group and charity, who provided the
support,  and guidance on how we could who
could help her. Without this FB Group and the Pans PANDAS UK charity, we wouldn’t
of got the help we so desperately needed.

We are still very much in the midst of our battle
with PANDAS and in our fight to get Ebony well again, however since being on
the right treatment and working with knowledgeable Doctors, Ebony is improving
slowly but surely. She has been out of school for over a year now, as she
cannot bear to have clothes on, she still struggles with severe OCD, food
restriction and easily tires. Ebony is desperate to get back to school, to feel
well again and to do the normal things 11 year olds do. As Ebony has improved
she has become more aware of what PANDAs/ PANS is, and understands now why she has
been so poorly. She wants to raise awareness, to help other children and
families that are struggling without any medical help and to raise awareness so
that people understand how this can affect children.

No child should have to suffer the way she has
and is, but there are thousands of children that have and still are, sometimes
going years without a diagnosis or help.

As a family we are joining the PANS PANDAS UK community
on October 9th and walk 4 km to support families affected by PANS and PANDAS. PANS
PANDAS UK are the only UK charity created to educate the medical community and
general public about these conditions with a view to ensuring better diagnosis
and early effective treatment for those affected with these little recognised
but life changing conditions. They help people affected by PANS and PANDAS by
providing support and information for families, letting them know that they are
never alone. Together, we will raise awareness, campaign for change and push
for better research into these conditions. With your help, a diagnosis of PANS
or PANDAS will be simple, treatable and accepted by all.