Last November, Sian Cave reached out to the Mito Foundation Patient Pathways Program after receiving a confirmed diagnosis of MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes). Michele, the foundation's Patient Pathways Telehealth Nurse took the time to understand Sian's health goals and developed a plan to help her achieve them.
“Michele was enormously helpful” Sian recalls.
MELAS has impacted many aspects of Sian's life including her ability to work. To help manage her day-to-day life, Sian applied for support from the NDIS with assistance from her doctor but unfortunately, the application was unsuccessful.
Realising that the NDIS application process was quite complicated, Sian decided to see if Michele could help.
Michele compiled a comprehensive report detailing the symptoms of MELAS, knowing that mitochondrial disorders are complex and very little is known about them. She offered Sian advice on which specialist reports to source and the particular information to include in order to boost the success of her NDIS application. These interactions between Michele and Sian lasted a few months and allowed Michele to offer additional support outside of the NDIS application including referring her to other Mito Foundation support services and resources to help Sian understand her MELAS diagnosis.
Reflecting on the NDIS application, Sian mentioned that Michele “wove through the application how MELAS impacts my life specifically.” and this attention to detail helped Sian receive approved support from the NDIS, in March this year. The next steps for Sian is to meet with the NDIS to help them better understand her health needs
The Patient Pathways Program is designed to give tailored support to people impacted by mito and help navigate a constantly changing health system. If you require assistance, please contact the Mito Foundation Helpline today.
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