We’re very pleased to offer this second in our series of ‘aHUS around the World’ where we feature the news and views of patients in a specific nation. Thanks to Joana Preto, we’re able to highlight atypical HUS in Portugal, with an article written by someone who is personally affected by this rare disease and therefore deeply understands the landscape which must be navigated by aHUS patients and caregivers. No one can better explain the needs and challenges of atypical HUS patients and their families than those who ‘rise above aHUS’ in their daily lives. We appreciate and applaud those people who juggle the myriad facets of busy lives, despite caring for themselves or a loved one living with aHUS, yet still make time to help us better understand the ‘aHUS space’ in their country.
After reading this very informative article by Joana, we hope that you too will have a better sense of what’s facing aHUS families in Portugal. The aHUS Alliance Global Action team strives to amplify the voices of aHUS families around the world, but we can’t do it without the hard work and advocacy commitment of actual patients and family caregivers. We hope that aHUS advocates in other nations shine a focused spotlight atypical HUS around the world, by sharing their own thoughts and introducing advocacy needs and efforts within their nation – yet can only happen when fine people like Joana Preto make the effort. If there’s no national aHUS patient group in your country, we can help! Learn more about our aHUS R.O.W (Rest Of the World) initiative to encourage and support aHUS global advocacy – Click HERE.
Atypical HUS Around the World
aHUS in Portugal – with SHUa PORTUGAL
In Portugal I had never heard of the disease aHUS, even when I studied nursing in college. The first time I had direct contact with this disease was after my own diagnosis, a month after my child’s delivery, which was a relatively rapid diagnosis in view of the emergence of this syndrome and the lesions it leaves mostly in the kidneys. When I came home, I started reading and researching aHUS and making the connections between possible symptoms, pregnancy, genetics…
Another need I felt was to seek help through support groups, and it was fortunate that I found the ROW (aHUS Alliance Global Action, Rest of the World initiative) on the aHUS Alliance website. I emailed and received an immediate response. I was introduced to Jeff Schmidt as lead for their ROW initiative, and who not only invited me to the Facebook group but helped me create a group for Portugal. Three years have passed, and our Portuguese group for aHUS families (SHUa Portugal) has no more than 10 people. I have tried to search and recruit, but it is not easy due to economic, structural and health accessibility.
The treatment available in Portugal is eculizumab, Soliris, administered every two weeks intravenously, whether in transplant patients or not.
In my role as the “Lead Patient Advocate – SHUa Portugal”, I’m working with other people who are affected by aHUS, especially during the first few years which are the most difficult. There is a lot in the lives of people and caregivers that changes, and adaptation is done too quickly, which does not accommodate professional and family life as desirable.
The legal rights to this disease are not defined in Portugal, and since it is a disease that “can’t be seen”, people think we are fine. The truth is that some days are hard, and our daily activities and lifestyles must center around the disease and treatments, even if it doesn’t appear that way to others.
The best and most useful aspects SHUa Portugal can offer are support groups and a reference network of people. What is still difficult is not having full availability for this “position”, which implies having availability with time flexibility, which is almost impossible.
SHUa Portugal is participating in global aHUS Awareness Day again this year, and while at present we do not have additional plans for September 24th, we may implement something later. I would like more people to be able to know about our Facebook page, or expand to create a SHUa Portugal presence on Instagram that would serve as support.
SHUa Portugal has a public Facebook page where we share public information about aHUS in Portugal. Here is the link: https://www.facebook.com/SHUa.Portugal
We also have a private group where those affected by aHUS in Portugal can connect with each other. Here is the link:
https://bit.ly/SHUaPortugalFamiliesFB
We look forward to sharing more updates about Atypical HUS Around the World – please share your advocacy efforts with us
E: info@aHUSallianceAction.org
