VIDEO: Dutch Acromegaly Patient Marjon van Iwaarden Shares Her Story

Acromegaly: A Patient’s Story

I am Marjon van Iwaarden, I’m a singer and singing coach. I am 41 and the mother of two.

Since 2010, I’ve been diagnosed with acromegaly. I’ve been a professional singer since 1997. I started in the Group 2 Unlimited, of international fame.

We traveled all around the world, and I didn’t think twice about it…driving back home to Zeeland at night after being in Amsterdam. It was all very easy but then it changed.

Since turning 30, I started feeling very tired. I could sleep forever and still wake up exhausted.

I went to my general practitioner and had a blood test. It revealed nothing, so I started doubting myself. Was I just tired from aging? From having two children? I tried all sorts of medication, even homeopathy, but nothing helped.

My jaw started hurting quite a bit. As a singer, that’s obviously a problem. Opening my mouth to sing was very painful. Even eating a sandwich would hurt. My feet and hands also started growing as well as my nose and jaw, and I was losing hair.

I started looking quite different. People would say, “We all age” of course everybody ages, and I fully accepted becoming older. but it’s quite a different matter too have an entirely different face within no time. As a woman, I didn’t like looking so different, It hurt me emotionally.

Once the diagnosis of acromegaly was established, I had surgery within three weeks. The tumor was here (points) and they were able to remove it, thankfully. They do it by lifting up this area and entering through the nose. Thankfully, it all went well in the end.

After the surgery, I kept on using the medication in order to keep suppressing the growth hormone. Furthermore, I visited the specialist twice a year to make sure everything is still alright. It does remain a chronic disease.

After the surgery, my appearance changed again. My jaw returned to its previous position, so I can once again enjoy singing. My nose has shrunk as well, and my feet have returned to their normal size. In terms of appearance, things are back to the way they used to be.

I still suffer from fatigue quite a bit, it just happens. You can still plan everything as best you can and realize where your limit is and still the fatigue will appear all of a sudden and then I still feel totally knocked out.

Sometimes that’s still difficult to cope with. In 2014, I participated in The Voice of Holland program. I told my story, that I had acromegaly and received so many responses from people who were pleased that our illness was finally being discussed.

I then got in contact with the pituitary foundation and have been an ambassador ever since.

As an ambassador of the pituitary foundation, I think it’s quite important that pituitary disorders may be recognized sooner if they become better known, then healthcare providers will be able to establish the diagnosis sooner.

I’m happy that the pituitary foundation exists I’ve benefitted greatly from it. They provide all of the necessary information about the disease and allow patients to meet each other. I can recommend to anyone interested in the pituitary gland and its disorders to visit the website Nederlandse Hypofyse Stichting.