Wendy's Journey of Hope with Adrenal Insufficiency/Addison's Disease

Author: Wendy Lau - Patient Leader

Hello, everyone. My name is Wendy Lau and I live in Hong Kong. I'm originally from the UK, but moved here over 28 years ago where I married and had two children. And in this video, I'm going to talk about my journey from pre-diagnosis of adrenal insufficiency through to the diagnosis itself. And then after the diagnosis how my life has changed. And I hope that this information will be useful for anyone out there who is facing this same situation. So just to give a little bit of background information, I came to Hong Kong in the retail industry. And I had a very high-powered job as a general manager for Hong Kong, China, and Macau.

That involved me flying backwards and forwards to the US a lot. It was very stressful, but I'm a type A personality. However, this all changed when our first baby died. I then had a second pregnancy, but because of the same type of problems I had to be put on bedrest for the entire pregnancy. And I successfully gave birth to a baby boy who is now 22-years-old. And after that, I tried to continue working in this high-powered job. But juggling the needs of childcare and me working very, very long hours just didn't work. So I quit my job and I decided to retrain as a teacher and had a second child, successfully, a daughter.

I did a degree in teaching in linguistics. Now this whole journey, I would place it back to 2009 when my mother died a very tragic death in the UK. I flew back for her death. I arrived two days before she died.

But the entire situation surrounding my mother's death was very, very traumatic. She died at home. The rest of the family couldn't handle it. I had to step in and take over the situation. My way of dealing with the pain was to inflict pain on myself. At that time I didn't realize what was happening to me was post-traumatic stress disorder. Over the next couple of years, my health declined in various ways.

Wendy's Journey of Hope with Adrenal Insufficiency/Addison's Disease

I started to feel unwell. But they were unspecific feelings. I would see a doctor and they wouldn't know what was really wrong with me until they found a lump on one of my thyroid lobes. We decided that it would be safest to remove it. And I was put on the drug thyroxin.

Now thyroxin is known to unmask adrenal insufficiency because we can't produce cortisol. And thyroxin actually increases the need for cortisol. Therefore, it increased my symptoms. I found a doctor, a GP, but one specializing in endocrine disorders. She arranged an early morning cortisol test. She phoned me and she said, you have full blown adrenal insufficiency.

And so I went to an endocrinologist. That endocrinologist immediately ran the Synacthen stimulation test to see how my adrenal glands would react. And I failed the test and was put on the medication hydrocortisone. But I would crash every single afternoon to the stage where I just felt really sick. My BP would drop. And it was at around that time that I was doing a lot of research myself. My research led me to the pump. And I decided that I wanted to try and go on the pump.

So I had to find a doctor who was prepared to work with me. And I found a doctor willing to do that. And we got me started on the pump. I'd just like to take a moment to talk about the pump.

And the main reason for using the pump is to be able to mimic the circadian rhythm because our bodies secrete the hormone of cortisol in different amounts during the day. For example, we secrete large amounts very early in the morning around 4:00 or 5:00 AM so that we have the highest amount in our bodies when we wake up and we're ready to function. And then throughout the day there are a few peaks, but mainly it goes down. And down towards nighttime when you're getting ready to go to sleep because you don't need the cortisol at that time. And then you will get to the middle of the night and it will gradually go up again. So that's the whole thinking behind the pump. Then taking the hydrocortisone, it didn't hurt my stomach as much.

And during that time I was able to start advocating for adrenal insufficiency because there are very few cases in Hong Kong. And the doctors here really know nothing about it. So I did a few sessions. For one of them, I went to one of our largest hospitals in Hong Kong. And a large group of senior doctors, including consultants, came to a presentation I made about adrenal insufficiency, about the diagnosis of it, about the different ways patients present with it, and about the treatment necessary in order to save lives. I was also able to address a group of what are called Doctors of Excellence, medical students who were in their fifth year and ready to go out as doctors. And I was able to also do a presentation for them about adrenal insufficiency.

The same thing, the presentation, and the need for hydrocortisone injections. And as much as I could give about this invisible disease. And the one thing that I have that has been really helpful is my ability to speak Chinese, and that has been a huge blessing to me. So I then went into my next phase of what I would call my journey. And that was a grieving phase for me. I went from being a Wendy who was very productive, running around all the time, to suddenly this Wendy that was beginning to be unproductive. I then had at the end of 2013 a major open surgery. And during that surgery, a nasogastric tube was accidentally put into my lung but wasn't found for seven hours, which resulted in a crisis and also a very bad lung infection.

After that day, my health went downhill to the stage where I became bedridden, almost unable to really function away from my bed. And I had a choice at that stage. Do I let this disease define me? Do I let it gobble me up and just give in? Or do I try to find a way to still be that productive Wendy that I was before, but just in a different way? I've always loved using computers, but I decided to teach myself how to make websites. And so I set up a few websites. I began writing educational books.

But for many, many years, I've had a dream. So when my daughter was young, she had to have a splenectomy because she had a condition called ITP, which is also an immune condition where your body doesn't make platelets. And she was refractory to all treatments. And so the decision was made to remove her spleen. And her journey with that and me as a mother was very difficult. She went through a bone marrow biopsy. Even just having blood tests was so traumatic for her.

She was eight years old at the time. And I searched and searched for stories or things. So a dream started in my head that one day, I would write an entire series of children's storybooks demystifying illnesses, procedures, and circumstances in order to help parents help children. I planned for these to be from something as simple as an x-ray, right down to chemotherapy for childhood cancer. And now that I was in bed, I began to realize this dream.

And it started to give me so much joy. The first book that I had published is called Andy's X-ray, which I'll show here. And Betty's Blood Test. And in all of them, I used certain characters, Dr. Daniel and Nurse Nina, to introduce the procedures. I also have Tony's Tonsillectomy completed. And Cherry's Check-up. And there is one that is almost ready to come out, which is called Diana's Diabetes.

And here is a little excerpt from some video animation software that I taught myself. I'm done, so you just enjoy this tiny clip from that. [MUSIC PLAYING] Being able to do this, to have learned all these new skills with websites and books has just been such a gift. Instead of letting the illness define me, it changed me into someone with hope, into someone with a purpose that I never would have been able to realize without this illness. So I have a message for all of you out there who have this illness. There is hope.

And the new you will be a better you, a different you, yes. Having a purpose and being able to realize my dream turned my life around. And I hope that the same thing will happen for you. And I wish you all the best.

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