Read time 3 minutes
Q-1) Could you briefly describe your story?
A-1) Diagnosed with POEMS Syndrome in November 2021 after around a year of symptoms happening. Took around 6 months and many tests and consultations to finally get a diagnosis.
Q-2) How has the disease changed your life, in terms of diet, work, and other activities?
A-2) From early 2021 my strength, ability to walk distances, and fatigue all got more severe, until by the time of diagnosis I was barely able to walk very far and required a mobility walker. I was unable to stay balanced on my feet and was frequently tired. Diet seemed unaffected until radio and chemotherapies started. I worked from home for a period was my walking and ability to drive were impacted. By April 2021 I had to give up work completely as fatigue was overwhelming.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group; depending on government initiatives; or reading about your disease.
A-3) Because POEMS is very rare, there is very limited information to be found and the Oncology / Hematology specialists at my hospital had no experience with it, hence why the diagnosis took so long. Luckily a Radiologist at the hospital had seen another case at a different hospital, with symptoms very similar to mine, which led to my diagnosis.
I have recently found a Facebook page with fellow sufferers from around the world and here in Australia, which has been a source of comfort and valuable information.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) I am fortunate the basic medical system in Australia allows for free treatments, although there may be delays and wait-for lists. That said, there are still costs associated with medications and the need for taxis, etc to attend appointments, which is a huge financial burden when not working.
I have had a stem cell transplant which does not cure completely but stops the production of Proteins that attack the nervous system. The stem cell transplant puts you in remission, but others have reported recurrences of POEMS, so effectively it is never truly cured. Also, the nerve damage can be permanent, dependent on the extent f the damage.
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) Because I have had to stop work it has severely affected me. I am fortunate to have an insurance policy for such eventualities. It only started after 3 months without pay after work and will only last for a maximum of 2 years. I am surviving on less than half of my work salary currently, which barely covers day-to-day bills.
Q-6) Are you trying out any alternate healing techniques?
A-6) None to speak of. I have not really heard of any alternative techniques other sufferers have tried to date which has helped.
Q-7) How did you and your family deal with your changed circumstances?
A-7) Family was fantastic in the support of me. From helping with household chores that I could no longer do, visitations when I was in the hospital, and helping with lifts for outpatient appointments. This process would have been extremely difficult without the help of family
Q-8) Please share one aspect of your journey that touched you most.
A-8) As per (A-7), family, neighbors looking out for me, and general kindness of people.
Q-9) What would be your message or advice to patients diagnosed with rare diseases?
A-9) Ensure you are getting
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
