The Hyper IgM Foundation Blog 

Update July 8th, 2021: It is with a heavy heart that I sadly share that one of our members, Madeleine Holth has passed away from complications of Hyper IgM Syndrome. She had recently been hospitalized due to a JC infection in her brain. She was 31 years old. Madeleine was a special person full of life and joy, very active in the fashion industry and was a well respected fashion journalist. She will be missed.

Below is Madeleine’s story in her own words: 

From time to time we like to share stories of patients living and thriving despite their Hyper IgM Syndrome diagnosis. Madeleine Holth, a 28 year old fashion journalist from Norway reached out to the Hyper IgM Foundation to share her story. See below:

Hello!

My name is Madeleine Holth, I’m a 28 year old fashion journalist, published writer and sporty Norwegian woman living with a combination Hyper IGM / Hypo IGG. I just wanted to tell you that I think you’re doing a great job with representing and teaching people about this syndrome and tell you a little about my story.

I personally wanted to reach out as a happy message to you guys. I believe I am one rare success story, unfortunately not everyone can have my story – but with optimism you will come far in this life with Hyper IGM.

I was a dancer for 11 years, (nearly went pro at one point), I quit simply because – well let’s just say I enjoyed other things rather than working out as a young teenager. The reason why I’m emailing you is because the average life expectancy may be 30, but according to my doctors – this doesn’t apply for me. I’m one of those rare cases where I have had minimal infections, I’ve haven’t spent a single night in a hospital bed since the age of 6. I work out, I eat, during the harsh Norwegian winter months I can get a little cough, but that’s about it.

So what? Many people live with IGM. Well I want people to know that no matter what you want to do – there’s a way to do it. Even with IGM. Me? I wanted to work in fashion.

With this illness not much is expected from you, you’re meant to exist in many cases, avoid the pleasures that life has to offer. Walking in the Norwegian mountains and drinking water from a glacier? Nope don’t think so. If I were you I’d google the Norwegian fjords, the water looks really tempting.

I was kicked out of high school for being too sick and absent from classes. I couldn’t keep up. What did I do? Well I loved books and to write so that’s what I did. I spent my days with small infections at home and turned it into something that’s now my job, writing. I was even accepted at the worlds 4th ranked fashion school solely based on my skill as I didn’t have grades from school.

Why do I write? Because if I ever get chained to a hospital bed, I will always have words, pen and paper.

Today, I’m happy, healthy, taking 40 ml Hizentra at home, with Bactrim at night and I’m the only Norwegian woman to every write for Vogue UK. All I want for the future kids with IGM is to make them understand that you too have the right to live, play, be happy – not just exist.

Thank you,

Madeleine

Check out Madeleine’s fashion blog and portfolio here: https://madeleineholth.com/