Helena

This patient story reflects only this person’s opinions about their own care. Each person’s case is unique.  You should always consult a doctor for information and advice about the diagnosis and treatment of acromegaly.

Please note that all treatments may have side effects. Ask your doctor about side effects when considering a given treatment.

I was diagnosed with acromegaly six years ago. I had many, many symptoms before that, but I had no idea what was happening to my body. What happened was I went away with my sisters one weekend and they were shocked about how bad my snoring was and my sleep apnea. They told me that I stopped breathing a few times during the night. And that really prompted me to go see an ear, nose and throat specialist.

When I went to see him, he immediately said that my nose was broken as soon as I sat down. And at that point, I had no idea that my nose was broken. I had realised that my face had changed and my nose had changed, but I didn’t know that it was broken. He then stuck a camera up my nose to see what was going on, and he advised me that there was a tumor and that I needed to deal with that immediately. And on that very same day, I went and saw a neurosurgeon who then diagnosed me, advised me that I had acromegaly. I felt relieved when I was diagnosed, but I also felt many, many emotions. I was scared, overwhelmed. There’s not much information about acromegaly, really.

So what you do is you go to Google to get information. And that was quite a shock to me, because if you google acromegaly, the very first thing you see is images of people like Jaws from the James Bond movies or Lurch from The Addams Family or, you know, WWE wrestlers. I had never heard of acromegaly before that. So that’s why it was a bit of investigative work on my behalf to get as much information about it as possible.

It’s scary because your body has already changed quite dramatically before that point. And you think, and you’re not sure how much more it’s going to change. And will it ever revert back to what it used to be as well. So there’s a lot of unknowns.

After I was diagnosed, when I had to come back and explain it to my family and my friends and explain the disease and explain what the process was going to be moving forward, it was quite difficult because I had never heard of acromegaly.

So it really was explaining to them what I had been through, how I felt, and then obviously giving them information like brochures and also walking them through information on the website as well. And you also don’t want to overreact. I had two sons, so I had to think about their emotions. And they’re like, what, mummy, you’re going to become like, are you going to end up looking like these people? So, it was a hard journey for them as well, as well as myself. And it’s also, it’s hard, it’s harder for me to see their reaction than it was, you know, for me going through it as well, especially my mum. It was hard for my mum. As they were provided with more information and we talked about it more. I think they felt more comfortable that things would be okay. That once I had the surgery and, you know, the treatment, you know, life would be okay.

I had some negative comments and I don’t think they meant them in a negative way. But it was more about, you know, talking about the fact that I had changed so much physically. You know, my hands had grown, my feet had grown, my facial features had changed. So when I was diagnosed, it was really interesting that people would say, you know, you’ve changed so much and I didn’t want to say anything or, you know, you look so different, but I didn’t want to say anything. So you heard a lot of those comments.

There was a little bit, at times I was a little bit angry because I was like, why? I wish you had told me. I wish you had told me that you had noticed changes. I suppose it’s very difficult for people to say you look different and not in a positive way, you look different in a negative way. So I was angry, but I could understand that, you know, a very difficult thing for someone to say as well.

So I was diagnosed in January and I had surgery in April. And then post-surgery because the whole tumor wasn’t removed. I’ve been on monthly injections ever since. Look the surgery went pretty well for me. The only side effect that really traumatised me was hair loss. But I think what it was is, part of having acromegaly is that you have a lot of hair. So I think it was just my body’s way of taking me back to where I should have been before acromegaly kicked in. But you don’t realize that at the time. I honestly thought all my hair was gonna fall out. Because, it was just clumps and clumps of clumps of it.

I had a nurse come up and see me post-surgery and she was able to give me some information about acromegaly, provide me some brochures and some information, and then basically describe the process post-surgery. Initially, I would visit a hospital every 28 days. And one of the nurses would inject me with the treatment.

Really, any symptoms I really get is as I’m coming up for my next treatment, as I’m due for my next treatment, I start to get a little bit more tired and I have joint pain, especially in my fingers. So what I tend to do is, you know, I try to take it easy or not do as much, or work from home a little bit more. I can’t have the treatment early or I can’t have more doses of the treatment. So it’s just being aware of them and just managing it until the next treatment is due.

I think it takes a few days for the treatment to work or to do what it does. And I start to get a bit more energy like day 2, day 3 after the treatment. After the treatment I have a few side effects and the side effects are diarrhea and sometimes I have back pain, but it only lasts a day or two. And then it’s, then I’m fine. But that’s every single treatment. So I know exactly how my body’s going to react to the treatment.

Besides the monthly injections and the doctors like, you know, going to see the neurosurgeon and the endocrinologists, it really doesn’t impact my life too much. I think even immediately after surgery, I could start to see that my face and my body and the swelling was, because you have a lot of swelling when you have acromegaly. You have a lot of swelling around the face and the eyes. Your body’s changed. Your hands changed. Your feet changed. I mean, I had eyesight problems. So those sort of things start to take effect quite quickly and you start to see the impacts and the changes quite quickly. But I still think that it takes years for you emotionally and mentally as well. And it’s because it’s a chronic disease and it’s something that you’re going to have for life. It’s just, it’s really hard to explain, but it’s just an acceptance that that’s part of who you are now and that’s part of your life. Yeah.

Look, when I was first diagnosed, I think it was a catalyst for some big life decisions. I have to be honest, because it made me realise that life is unpredictable and you have to be healthy, happy and not have stress, because I really feel that stress might have been one of the causes of me getting acromegaly.

For people that are newly diagnosed with acromegaly, what I would say is take time, read the information, let yourself feel all the emotions. Don’t feel guilty about being overwhelmed or lost. Think about yourself and start to take time out. And I think it’s really important to talk about it as well. Yeah. And not hide it. A lot of people that have chronic diseases don’t talk about it, but I found it quite cathartic to talk about it.

For people that are about to go into surgery, I know that it’s very, very overwhelming and scary, but just know that it’s the best thing for you and for your acromegaly, because once you have the surgery and once you start the treatment, it’s the journey back to becoming you. So, and I totally understand why people are, you know, quite scared and overwhelmed. But it’s the best thing that you could do.

Look after yourself, you know, be healthier and, you know, try not to have stress in your life. Just know that with the treatment, that you can live a normal life, that you will start to look and feel like your old self. But it will take time, and you have to be patient and you have to give yourself that time.