Kathleen cares for her brother, Stephen, who was diagnosed with CBD just before Christmas 2021.
Below Kathleen shares details of the impact Stephen’s diagnosis had on her family and what support she received from PSPA.
“Christmas has been quite different in our family since my brother was diagnosed with CBD in 2021.
Thyroid problems had disguised increasing symptoms Stephen was experiencing for around five years. Medication failed to make a difference, so we knew something else was wrong.
Stephen eventually received his CBD diagnosis just a few weeks before Christmas. He was only 50 years old.
At a time when families were celebrating the festivities, we felt nothing but despair.
Knowing Stephen had been diagnosed with a rare condition which had no treatment, and no cure was really tough to get our heads around. Life became a cycle of fire fighting challenges and changes. Only being able to tackle each one as they appeared.”
“PSPA’s Helpline became a real lifeline to us. Having someone to turn to for information and guidance, who really understands CBD, the symptoms and progression is invaluable.
The Helpline helped me to navigate the local health and social care system following his diagnosis, which seemed to be directed at supporting Stephen’s other well managed health problems. They also provided me with a Support Grant to purchase a battery pack for Stephen’s wheelchair to help me get him out and about easily, after Stephen’s mobility got worse.
As things changed over time, and during some of Stephen’s hospital stays, PSPA has been there to check in with, provide information and sound out options. Now Stephen has moved into a care home, PSPA is providing training to the staff to ensure they fully understand CBD and provide the best care for his changing needs.
After all the support we’ve received from PSPA, we’re now keen to give back to the charity anyway we can.
That’s why we’re supporting PSPA’s Bauble Appeal. The funds raised this Christmas will help support families like mine, with vital information and support.”
HELP MORE FAMILIES LIKE KATHLEEN’S
You can help more families like Kathleen’s by donating to PSPA’s Christmas Bauble Appeal.
You can donate on our website or by giving us a call on 01327 322414.
