Article No 366
4 August 2020
An aHUS ROW (Rest of the World) update : Spotlight on aHUS Norway
There are many wonderful aHUS associations around the world that support families affected by aHUS in their country. This is key to helping those newly diagnosed patients who are looking for support. Many of these associations can be found HERE (https://ahusallianceaction.org/patient-associations/). But there are too many countries where this support is not available, leaving families affected by aHUS in those countries feeling alone. That’s where ROW comes in. ROW stands for Rest of the World. It is an initiative of the aHUS Alliance to bring together those affected by aHUS around the world who don’t have an aHUS association or any official support in their own country.
Some of the early additions to ROW are countries that had no official association but had already formed Facebook groups to connect with other families affected by aHUS.
The following are ROW Countries who had no aHUS association, so I have created or helped create their own private Facebook group and public Facebook page to help connect families:
Bulgaria (March 2018), China (June 2019), Cyprus (February 2020)
Czech Republic (January 2020), Egypt (June 2018), Finland (November 2018),
Iran (July 2018) , Israel (December 2017), New Zealand (July 2015,
Norway (October 2019), Portugal (March 2020), Slovakia (May 2019)
South Africa (October 2017), United Arab Emirates (December 2017).
Many of these Facebook groups are still in an initial state where the sole activity is connecting with other families in their country affected by aHUS. The hope is that these groups will progress into something more and eventually become official associations.
One such emerging group I’d like to spotlight is aHUS Norway. I “met” Maren Millehaugen from Norway back in February of 2019 through the Rare Disease Day video project I was working on, and then again in September of the same year for an aHUS Awareness Day video project. It was during that project that I found out from Maren that there was no aHUS association or support group in Norway. I quickly learned that Maren was an amazing teenager dealing with aHUS, going to school, and wanting to advocate for those affected by aHUS in Norway. I created a private Facebook group for aHUS Norway and we connected families in Norway affected by aHUS. It was amazing to see how happy families were to connect with others in Norway affected by aHUS and to not be alone.
We also created a public page to share information with the public about aHUS in Norway. Realizing that Maren has tremendous passion to help those affected by aHUS in Norway, I asked her to be the “Lead Patient Advocate – aHUS Norway” as part of ROW. Maren accepted this role and has already had a conference call with the Global Advocate from Alexion supporting the Nordics to discuss the situation in Norway. And I am proud to say we have the support of Dr. Anna Bjerre, pediatric nephrology specialist at Oslo University Hospital in Norway. She has treated all known aHUS patients in Norway and is Norway’s aHUS expert.
I’d like to introduce you to Maren. Here is what she said about her aHUS journey:
“I am Maren, the Lead Patient Advocate of aHUS Norway. My journey began in the beginning of January in 2018 when I first became ill. At this stage, my doctor thought I had a common infection as my only symptoms was a sore throat, fever and a swollen face. However, it soon became obvious to him that I was misdiagnosed, and he sent me to the local hospital for further assistance. There, no one could tell me why my kidneys had begun failing. The three doctors assigned to my case tried to find a diagnosis, but with each one, and the treatment that followed, my health kept worsening. I was “given” to a new doctor at another department who in the end decided I should go to Oslo and get a kidney biopsy. This was in the middle February, and also when I was diagnosed with aHUS.
I was immediately put on eculizumab, literally got my first dose a few hours after I was diagnosed and was given all the medical information the doctors in Oslo could give me. But there was one thing they couldn’t tell me that I, as an almost 16 year old girl, just had to know; would I be able to live normally? My mom went to Google straight away to try to find the answers I needed, and she found the aHUS Families group on Facebook a few weeks later. By this time, I was well into my treatments and slowly getting better. My family spent hours browsing through the posts in the group and we realized that I was not the only one living with this and that I was lucky to live in Norway where all treatments are free (except for some personal fees at 15 – 50 $ for appointments and medicine). I kept on being an observer, a so-called fly on the wall, just to see if having a normal life was possible when aHUS was a part of it.
In 2019, as Jeff said, I started to engage myself in the projects he had. It was through one of these that I discovered that there were more aHUS patients in Norway. Through me getting to know Jeff, we also got to talking about what it was like to live with aHUS in Norway. My best answer to that was that it really wasn’t that challenging medically, but no support systems for those with aHUS specifically existed. So the idea of aHUS Norway was born. Then suddenly it was a reality and I had contact with the other aHUS patients in Norway. Suddenly, we weren’t lonely. We got to exchange our journeys. That’s how aHUS Norway mainly works as well; as a support system for the few aHUS patients* in Norway.”
I am Jeff Schmidt, lead for aHUS R.O.W., and can be contacted at email@example.com for assistance and information on creating an atypical HUS patient advocacy group in countries without such a group. To follow aHUS news from Norway you can go to the Facebook page “AHUS Norge – AHUS Norway” at https://www.facebook.com/aHUS.Norway . And if you or a family member are affected by aHUS and live in Norway, please request to join the private Facebook group “aHUS Familier Norge – aHUS Norway Families at https://www.facebook.com/groups/1316129251904718/ .
*Note : With a population of around 5.5 m there are likely to be 28 aHUS patients in Norway with 3 new patients onsets each year.
Previous article about aHUS ROW can be read here.
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