Association for Multiple Endocrine Neoplasia Disorders

MEN2 (MEN2a) Patient Stories from members of AMEND

“I found incurable to be unacceptable. I wasn’t able to control my diagnosis or the fact that I had cancer, but what I was able to control was how I approached my diagnosis.”

Becky MacKenzie currently works as an Occupational Skills Trainer for Goodwill Industries of Southwest Florida.  She is very active with the American Cancer Society Cancer Action Network (ACS CAN) and is on the Board of Trustees for AMEND USA.  She is also a featured blogger for Mass Kickers Foundation.

What/ when was your diagnosis?  How did you find out about your diagnosis?

On February 16, 2009, I was diagnosed with metastatic Medullary Thyroid Cancer as a result of a genetic disorder called Multiple Endocrine Neoplasia Type 2a.  After a couple of years of feeling run down, chronic infections and bouncing from doctor to doctor I had a genetic test that confirmed the disorder and a neck ultrasound and fine needle biopsy that confirmed the Medullary.  I never forgot the words I heard that day, “It’s medullary, very rare.  We’re going to take care of you.  We know of at least one surgery you will have.  There is no medicinal cure.”  Those were the most life-changing, jolting words I have ever heard.

What were your symptoms?

I wasn’t feeling like myself for a couple of years.  I had constant headaches and infections and contracted MRSA twice. I don’t know if those things are related to my cancer, but I know that I haven’t experienced anything like that since my first surgery.  At the time, it was like my body wasn’t doing what it needed to do in order to fight things off and I was always tired.

Why did you get involved with advocacy?  What groups are you involved with?  What do you do?

I found incurable to be unacceptable.  I wasn’t able to control my diagnosis or the fact that I had cancer, but what I was able to control was how I approached my diagnosis. I really believe that, in my lifetime, we’ll find either a cure or more drugs to help maintain stability.

I am involved with the American Cancer Society and their sister organization, the American Cancer Society Cancer Action Network (ACS CAN).  I started telling my story at local Relay for Life events and became the Advocacy Chair for one of them.  I learned that the government is the largest funder of cancer research in the United States and that the American Cancer Society is the largest nongovernmental funder of research.  Together, they do so much!  Living with an incurable form of cancer, I feel like it’s my obligation to ensure that funding is available for that research.  I am now the ACT Lead for Florida’s 19th Congressional District.  In that role, I talk to people about public policy that will affect cancer patients and encourage lawmakers to support legislation that will help people affected by cancer.  That includes legislation affecting cancer research and a patient’s quality of life.

I also serve on the board for AMEND USA.  It’s important to me that people who are diagnosed with cancers and disorders like mine have a place to go for accurate information and support. AMEND provides both of those things both in the United States and on a global scale.  Having a rare disease can be complicated, so it’s essential to locate good information and expert care.

Who is your hero or heroes?

Kris Carr rocks.  She is way up there. I watched her documentary, “Crazy Sexy Cancer,” two days after I was diagnosed and she helped me develop an “I can do this” attitude.  She was so relatable!  We were both incurable, both diagnosed around Valentine’s Day and both willing to look at all aspects of treatment.  I look up to people that can take a circumstance that tells them “you can’t do this,” and turn it into “yes I can” and sweet freedom.  Life is full of obstacles, but even more so, it’s full of sweet freedoms.  Then there’s Brian Williams.  Yes, the news anchor!  I think he’s remarkable.  I’m completely obsessed with him.  So much so that he got away from me very quickly when I once saw him in public.  I think my excitement scared him!  I think he’s intelligent, well-spoken and beyond funny and he has the career I wanted when I was growing up.  If anyone knows BW, holler at me.

What motivates you?

Feel good music, the movie, Rudy, and people that emit that feel good vibe.  It’s noticeable!

When was the first time you felt like yourself after your diagnosis?

I’m not sure.  At some point, I definitely started feeling a new sense of self, more comfortable in my own skin.  I like myself in a way that I don’t think I ever did before, but I’m not sure how or when that happened.  I just know that I’m glad it did.

What makes you laugh, cry, get angry?

My Mom (funniest person ever) makes me laugh.  So does Stephen Colbert.  And laughing makes me cry.

I get angry when someone diminishes another person’s pain.  Everyone’s story is unique and everyone feels pain differently.  Telling me my cancer is the good kind to have, for example, might prompt me to lecture you for an hour about the effects of thyroid cancer.  Spend a day in my world and you’ll see that no matter what goes on in my life, I always carry cancer in my back pocket.  I don’t have any other choice.

What would you say is the most interesting thing you’ve done?

I’d say the endurance events I’ve participated in.  Last January, I ran the Goofy Challenge at Disney World.  That event consists of a Half Marathon on a Saturday and a full marathon the very next Sunday.  I also ran a relay race across Florida.  After that, I hiked the Grand Canyon.  People always ask why I participate in endurance events like that.  Why not, though?

What was the toughest challenge you faced as a survivor?  How did you overcome it?

Pre-diagnosis, I was afraid of everything.  I think I could have been classified as a hypochondriac.  Seriously.  Actually hearing the words, “you have cancer” made me want to board up my house and stay in there forever.  Mentally, I didn’t do very well at first and I had a hard time getting back into life.  I started networking with young adult survivors online and witnessed other people living with their diseases.  They weren’t dying of cancer.  They were LIVING WITH it.  Like fully and completely living.  Everyone deals differently and there isn’t one set way to vent or behave, but I think that at some point you have to make a choice.  You can either board up your house and stay inside or you can embrace the sweetness around you.  I got to a point where I didn’t just want to live; I wanted to experience life.  I credit my fellow survivors with that.  My cancer’s not going away today or tomorrow and I will not let it get the best of how I feel.

What are 3 things you can’t live without?

My cousin, Erin, because she’s the sister I never had and she always brings me back to Earth when I need it the most, NBC Nightly News because Brian Williams is my idol and my Mom because she loves me no matter what.  I know what I CAN live without.  My thyroid… Don’t need that thing!

What do you like to do in your spare time?

I run like there’s no tomorrow.  I love running and I don’t know where I would be without it.  A good portion of my free time is spent being with myself out on the road.  Other than that, I love hiking, exploring new cities and reading about Presidential history.  I’m training for the Philadelphia marathon in November.  This will be my third marathon and one I’ve always wanted to do!

Any advice for people or loved ones who get daunting diagnoses?

No one person can tell you how to deal with your diagnosis or what’s acceptable.  We are all different with varied experiences. Be fearful and angry when you need to.  Fear and anger feelings and stifling feelings isn’t healthy.  But be grateful when you can, as well.  You deserve those moments, too.  Cancer’s never easy and I’m not a person that believes that everything happens for a reason or that you have to find a silver lining in everything, but I know that just when you think the world might fall on top of you, hope breathes through.  I believe in hope and I believe it’s always somewhere.  You never know what breakthrough, piece of good news or act of kindness is just within your reach.

Tell us something about yourself that people probably didn’t know… anything.

I’m petrified of birds.  It all started when I was a little kid and Tom Turkey bit my finger when I stuck it through a fence.  My relationship with birds went downhill from there.  Also, I love Motown.  The Temptations all day, baby!!

Any parting words?

Tell your story. Your story will help fund research and encourage others to do the same.  Your voice is powerful and effective.  Never, ever think otherwise.

I started getting symptoms aged 21. Out of the blue I would have these episodes where my heart would start to race, I’d feel nauseous, go deathly pale, lips would be blue and I would go very weak in the limbs. It could last anywhere from 30 seconds to 5 minutes and as time went on the episodes occurred more and more frequently. My doctor thought I was having panic attacks but I knew it was something physical. After a lot of appointments where I would push for another explanation, he finally sent me to a cardiologist.  The cardiologist did a few tests and told my heart was fine but he said that I may want to test my adrenal glands. When I asked why and how the test was done, I didn’t like the answer so I didn’t take it any further nor did my GP follow me up on it. I put up with these episodes for the better part of a decade.

When I was 31, in 2004, I had just started dating my now hubby when we received a call from my Aunty in the UK.  She had been struggling with breast cancer for years and had some devastating news for our family.  During all of her testing, it was revealed that she also had a very rare form of thyroid cancer which was genetic and part of MEN2.

When my parents sat us down explained this to us and told us we were all to be tested for the gene, I knew immediately that this was what was wrong with me and I was actually relieved to finally have some answers but I also had a sudden pang of guilt as I remembered the cardiologist words from years earlier that I had ignored.

Testing started with my dad, because if he didn’t have the gene, none of us could. Children of the gene carrier have a 50/50 chance of also carrying the gene. I chose to test at the same time as my dad because the results took up to 6 weeks and I knew in my heart that I would have the gene. We both came back positive as well as my younger brother came back positive as well. 2 out of 4 kids had the gene.

Due to the nature of the thyroid cancer, all carriers have their thyroids removed at a young age as a preventative strategy. By this stage, my aunty, being undiagnosed for so long, had already developed metastases in her lung and bones.  After surviving breast cancer, this was a terrible blow for her.

My dad and I began the barrage of tests to determine the extent of the disease. We both tested positive for MTC and also for adrenal tumours. My dad's surgery on his adrenal tumour was scheduled first.  Mine was to follow a few weeks later. The surgery itself has it’s complications as even the general anaesthetic can kill you if you have an adrenal tumour.  The necessary precautions were taken and even so, my dad died and was revived 3 times on the operating table. By some miracle, doctors managed to save him and he is still with us today.

I was up next to have my right adrenal removed. My left gland looked clear at this point. Funnily enough I wasn’t worried about the surgery, more so about the recovery as I had never had major surgery before.

Four weeks after the adrenal surgery we were scheduled to have our thyroid surgery. After the surgeries, the biopsy results came back. My dad, myself and my brother, were all confirmed to have medullary thyroid cancer (MTC).  They also removed our parathyroid glands and many lymph nodes in the surrounding area to be sure to remove all cancerous cells.

Normally in a healthy person your thyroid makes the hormone thyroxine which regulates the metabolic rate so from here on, I was to take synthetic hormones to replace those made by the thyroid. I also had my Parathyroid glands removed which regulate calcium in the blood and bones so I am now dependant on calcium tablets and also have to have bone density testing on a regular basis to monitor for osteoporosis. Luckily at this stage I still had one adrenal gland left, which should pick up the slack of the missing gland because you really don’t want to lose both of those.

I have to say that my hubby and I had only been together about 2 months when all of this came about. He was honestly an absolute blessing. I was still in the honeymoon phase of love and this took up more of my attention than the cancer.

After these surgeries, we were all in the clear (so to speak) and just had to have 6 monthly / annual tests for the rest of our lives.  After everything died down, hubby and I married.  Sadly, after trying to have a baby for quite some time, it was discovered that we needed help. In order to be approved for IVF, you need the all clear from any cancer for 5 years. I had the necessary testing and got the letter from my specialist to say I was good to go. In 2009, we had our first egg retrieval and I almost died of a massive internal bleed. I had no idea at the time what had caused it and neither did the doctor. Luckily I recovered and after 2 rounds of IVF we fell pregnant with our first child. When I was 3 months pregnant, we moved to Western Australia.  When I was 6 months pregnant, I felt a lump in my neck.  After Jacob was born, I started to get the heart palpitations again.

When Jacob was a couple of months old, I began the testing; CAT scans, ultrasounds, blood tests. The thyroid cancer had spread to a lymph node and it was decided that I undergo what is called a radical neck dissection whereby all of the lymph nodes in the neck, shoulder and chest area are removed. I had no idea at the time, how invasive this surgery would be.

My blood tests were also showing signs of another adrenal tumour. The doctors were pushing me to have a highly radioactive scan called an MIBG. The half-life of the radio-isotope they inject into you for this scan was 6 months which is huge! When the doctor sat me down and I was told I would have to stop breast-feeding my baby in order to have the scan I broke down in his office for the first time since this all began.  I could not believe that this was being taken away from me. I held my 3 month old baby in my arms and told the doctor to go to hell.

I know this sounds completely mad now, but at the time, the most important thing in the world to me was to feed my baby. I refused the scan, refused the medication to prevent a stroke or heart attack from the adrenal tumour and continued to feed my baby.  I think I was in denial. I put my head in the sand for another 2 months. During these 2 months I Googled and Googled, looking for a way to have 2 major surgeries, a radioactive scan, and also to keep feeding my baby. All the while I was creeping out of bed at 2am, expressing and stockpiling milk, so subconsciously I guess I knew what I would have to do in the end.

I went ahead with the scan when Jacob was 5 months old. I was not allowed to pick him up or cuddle him for 3 days as I was too radioactive. The scan revealed another adrenal tumour on the other side. This explains why I had almost died during a simple IVF procedure. Any surgery performed with an adrenal tumour can be dangerous so I was very lucky looking back. I flew back to Sydney for my next round of surgeries as I had a lot of faith in my medical team and didn’t want to go to anyone else. The 2nd adrenalectomy would mean that I would be steroid dependent for the rest of my life. Adrenal glands produce hormones that are vital to life, such as cortisol (which helps regulate metabolism and helps your body respond to stress) and aldosterone (which helps control blood pressure). They also produce adrenalin in response to stress and regulate the balance of salt and water in the blood.

I now had what they call surgically induced Addison’s.  I would have to carry an emergency injection kit with me wherever I go to be administered if I am injured, sick, in shock or unconscious etc.  The adrenal glands are a pretty vital organ and losing both was something I was very worried about.  My beautiful Aunty from the UK offered to fly over to Australia to help me through it. She lost her battle with this dreaded cancer last year so I deeply regret knocking her back on her offer as I would have gotten to see her one more time.

The recovery was difficult but 4 weeks later I went in for my radical neck dissection. This was the most horrific operation I have ever experienced (and I have had 6 surgeries including 2 C-sections). Due to the fact that they cut through nerves, I lost all surface feeling from my cheek, chin, down my neck, out to my shoulder and my ear, as well as all around the back of my head and down my shoulder blade.  I still do not have all the feeling back to this day although it has improved somewhat I can’t carry my handbag on that shoulder. The worst part was when my baby tried to put his little arms around my neck. I couldn’t feel his little hands on my face.

As a first time mum with a new baby, I was very angry. I felt ripped off that I wasn’t allowed to enjoy just being a mum. I would look at him and wonder if I was going to be around to take care of him. I was stressed out that I might never be rid of this thing as well as worrying that I had passed on what I had to my baby.

Looking back on this I feel very lucky to be alive. I was told that only one of the 100 or so lymph nodes they removed was cancerous so I had some chance that I won’t have metastases down the track. I was originally told that metastases were inevitable so this was great news.

After the 2nd round of operations, I had about a month to recover and then stupidly went all out undergoing IVF again in the hopes for another baby. I did not give my body enough time to heal completely as all I could think about was all the time I had wasted having surgeries when I should have been doing IVF.    The first month of IVF failed. The second month failed. The third, fourth and fifth and sixth month failed. The seventh month we decided to transfer 2 embryos which also failed. At this point I had one embryo left. We were out of money and my husband was out of patience. I was getting desperate. I decided to undergo an elective D&C. I started to see a natropath, I drank brown goop every morning and I underwent acupuncture.  I also prayed as hard as I could and I basically begged God to let this last attempt work. When I received the phone call from the clinic to say that my pregnancy test came back positive, I literally dropped to the floor in a blubbering mess.

I now have 2 beautiful boys and both have been tested for the gene. Jacob was tested at 2 years of age and came back negative. Nate was just recently tested and recently we got the amazing news that he too is negative. I have to say we were offered genetic selection at the IVF clinic but declined. I do not think we would have any children today had we thrown away 50% of our embryos.

I am now on a concoction of medication for the rest of my life. I have to carry an injection kit everywhere I go. My mood, weight, mental wellbeing is all regulated by pills, but overall I am in pretty good health. I keep fit and am happy and have a very optimistic outlook on life. I can eat all the salt I like and I may not be able to go to Bali without all the drugs but at least if I go up to the ER I am always fast-tracked!  I find getting out of bed every morning particularly hard as I am running on empty by the time I wake up and have to wait for my medication to kick in whereas normal people would have a rise in cortisol from about 4 am so that it is peaking upon waking. But I am grateful that I get to wake up every morning: each and every day.

My latest blood tests indicate higher than normal traces of calcitonin, suggesting microscopic cancer cells still remain in my body. There is nothing I can do at this point but wait. This is not an aggressive cancer in that it is slow growing but once it takes hold, there isn’t a lot you can do other than surgery. There is no cure yet for this type of MTC. They can manage it and at best try to prevent it from spreading, however this type of thyroid cancer does not respond well to radiation or chemotherapy.  The reason for this is because chemo attacks fast growing cancers; this has a slow growth rate and it won’t work.

Unfortunately, my dear Aunty lost her battle in 2013 from lung and bone metastases. I am forever grateful to her for discovering the gene which gave us all a fighting chance. I am so grateful to be here today. To have an adrenal tumour for 10 years and come out the other end pretty much unscathed is nothing short of a miracle. I could have had a stroke, heart attack or died at 21, but I didn’t.

 

Take home lessons:  If any of you are putting off going to the doctor about something that may scare you or sounds unpleasant. Just think, maybe it’s not just you that this may affect. Maybe your early detection of something will help out another family member. Had I gone ahead with the adrenal test when I was 21 would my aunty still be here today? I don’t know & I don’t like to think about it but I definitely stay on top of all my appointments these days and I urge everyone here to do the same.

[2014]

“Do you believe you can fly?” asked the community psychiatrist.

If I didn’t have my head over a bucket puking up the nothing I had eaten for weeks, I would have made HER fly – right out the window - for asking such a stupid question.  Wearily I shook my head.  Couldn’t she see that I was ILL?

For weeks now I had been retching and vomiting, unable to keep even water down.  I had been suffering episodes of severe ‘migraine attacks’, palpitations and breathlessness off and on for 3 years since the birth of my first child, but now, 9 months after the birth of my second baby, they were ever present and significantly worse.  My family doctor was insistent, despite my protests, that the attacks were due to postnatal depression and had prescribed a cocktail of drugs to no avail.  It seemed the antidepressants and sleeping medications were making things worse and I was now desperate.

“Do you want to harm yourself?” the psychiatrist persisted.

A sensible question at last!  All I could manage was to nod pathetically into my bucket.  What was the point of going on like this anyway?  No one was listening.  Suddenly, urgent phone calls were made: to my husband to check if I had private health insurance; to my family doctor; to a psychiatric hospital.

“They can take you tonight, it’s all arranged” she said.  I could not have cared less anymore.

My husband and my mother carried me almost unconscious into the psychiatric hospital.  This quiet unassuming place was to be my saviour.  After 3 years of pain, it was now a matter of days before they had diagnosed a large adrenal tumour (NOT post-natal depression).  The tumour (a phaeochromocytoma) had been causing my blood pressure to reach immeasurable heights and had put me at serious risk of stroke and heart failure.  In fact, the surgeon who finally removed it hadn’t seen anything quite like it for size and activity (probably because he doesn’t perform post-mortems).

Once again, things began to move fast and I held on tight as the rollercoaster began.  6 months after my phaeochromocytoma was removed my genetic test returned a positive result for MEN2 (codon 634).  Shortly afterwards my cancerous thyroid was removed without incident.  Next, my family was tested for MEN2 resulting in the diagnosis of my son (then 2) and my mother.  My mother had had her thyroid removed more than 10 years previously for thyroid cancer but the pathologist hadn't checked for MTC and so it had been missed; however it seemed that the surgery she received at the time had done the job anyway.

On September 11 2001 my mother had both her adrenal glands removed after diagnosis of bilateral phaoechromocytomas.  Whilst she was in theatre the shocked theatre staff and I watched the horrific events unfold in New York on the theatre suite lounge TV.  In 2002 I was back in for the removal of my remaining adrenal gland.  So now both my mother and I were steroid-dependent.

At the age of 3 my son had a prophylactic removal of his thyroid to avoid developing medullary thyroid cancer.  This was tougher to deal with than my own surgeries and medical dramas.  I was in pieces as he was anaesthetised using gas while sitting on my knee.  As he came around after the surgery he told me blearily to 'go away' and I was ecstatic - he was going to be fine!  He now has a regular monitoring programme in place and a specialised paediatric endocrine nurse who he thinks the world of.  He is learning gradually about MEN2a and what we're looking out for in the future - phaeochromocytomas.  I try not to let him see me jump with nerves every time he mentions that he has a headache!

I do really well now, on the cocktail of drugs that keep me alive including the steroids, and I'm regularly monitored for optimum doses and disease recurrence.  In 2007 I had my left shoulder joint replaced after a suspicious area of bone lit up on scans in the top of my humerus.  I had been in excrutiating pain for months and although the pathology was inconclusive and the recovery was long and difficult, I am now pain free in that shoulder and can do most things.

In October 2012, I was part of the AMEND Maniac Endocrine Nomads team which trekked 120km through the Sahara Desert to raise money for the AMEND Research Fund.  It was tough but I did it and I hope that this will be an inspiration to anyone else out to not let your disorder define you.

As you might expect, primary healthcare is one area of concern for me for patients with rare diseases like MEN; particularly regarding diagnosis.  My UK NHS team were fantastic throughout, and my current team are also, confirming the need for rare diseases like MEN to be managed in an expert multidisciplinary setting.

I had so very nearly died back in 2000 and this would have left 2 very young children motherless.  The thought of what could have happened still haunts me today.

Jo (Cameron’s mum; age – ancient according to Cameron)

Cameron had no symptoms of medullary thyroid cancer at all since his total thyroidectomy was done prophylactically (to prevent cancer).  When it was discovered that I had the rare genetic disorder, multiple endocrine neoplasia type 2 (formerly MEN2a), both my children underwent genetic testing which identified that only Cameron had inherited the faulty gene.  All patients with MEN2a develop medullary thyroid cancer (MTC) and so we made plans for Cameron to undergo a prophylactic total thyroidectomy when he was just 3 ½ years old in the hope that this would ensure he never develops MTC. 

Cameron had a few blood tests before surgery to see if this would tell us whether or not he already had MTC, but they were not entirely conclusive and one, the pentagastrin stimulation test, was somewhat barbaric for such a young child (and is no longer done in children).  The histology later showed that Cameron was beginning to develop the cancer since there were areas of what is known as C-cell hyperplasia (the precursor to MTC).

Back in 2002 there was a difference of opinion as to when to operate to remove Cameron’s thyroid.  A paediatrician said to do so before the age of 5 and a surgeon thought it could be left until after puberty.  Since then things have moved on in the way of knowledge and there is now agreement as to when to perform surgery (asap or before age 5 in our family’s case).  At that time, which was pre-AMEND, it helped me most to talk to another family in the USA with MEN2a, and whose daughter had undergone surgery at age 4.  She did already have MTC cells in her thyroid and this gave me the determination to insist on early prophylactic surgery for Cameron.

Once the right surgeon was found it was relatively plain sailing.  Kids are generally amazing at recovering from surgery and Cameron was up and about finger-painting and demanding jam sandwiches within an hour of waking from the anaesthetic.  He stayed in hospital for just 2 nights after surgery mainly because he needed regular blood tests to check his calcium levels which had dropped quite a bit due to parathyroid gland injury.  He had had a parathyroid auto-transplant in his neck but it took a few weeks after surgery for this to start working again properly.  Once home the blood tests continued for a couple of weeks at our local hospital and he found this rather traumatic as it seemed every ‘Tom, Dick and Harry’ wanted to practice on him. Due to this Cameron developed an acute fear of needles which has taken years and plenty of encouragement for him to overcome, but he’s got there now.

Being so young it was hard to get Cameron to take his levothyroxine at first.  He couldn’t manage to simply swallow a pill as we adults do and so I began by crushing the tablet and either putting it in a spoonful of apple sauce or by dissolving it in a syringe of juice.  The latter caused tooth decay very quickly and so, full of guilt, I encouraged him to take his pills ‘like mummy does’ instead.  He quickly caught on and now happily pops his pills with breakfast in the morning, but generally only if he’s reminded to do so!

At the time of his surgery Cameron was too young to understand much about what was going on.  At that time I told him that he had a ‘bad butterfly-shaped thing’ in his neck and that it needed to be taken out before it made him very poorly and he seemed to accept this.  He has to learn considerably more about the other aspects of his condition as he grows older and I am totally honest with him when answering any questions he has.  He knows the signs of hypothyroidism already and once insisted that he needed a dose increase because he was feeling so lethargic, had bags under his eyes and was getting chubby around the middle – he was proved correct with a blood test!

To other parents I would say, get informed and don’t be afraid to question your child’s healthcare professionals.  Also, when they are to face a lifetime of monitoring blood tests it is essential to insist from day one that these are done by someone experienced in order to avoid repeated jabs and the increased stress and anxiety that go with this.  Finally, be very honest with your child; they know if you’re not!

 

Cameron (Jo’s son; aged 13)

I can’t remember much about my operation because I was only 3!  I do remember the hospital a bit because it was fun, the nurses were really nice and they had an aquarium with loads of different fish in it.

I take my pills every day with my breakfast but sometimes I forget.  I now take two pills, a 100mcg and a 25mcg.  I was on 100mcg but I was feeling tired all the time so that’s when mum and I thought that I needed more.  I had a blood test and the doctor wrote a letter to say that I needed another pill.  I now have much more energy and enjoy playing lots of football and I also love to ski.  I think I feel like a normal boy!  Some of my friends know a little bit about my condition and I wear a MedicAlert bracelet, but other people don’t know that there is anything different about me.

To other children like me I would say don’t panic about your blood tests.  Try to watch the TV or something while they do it.  I began to think the blood looked like blackcurrant juice when it goes along the tube and that made me laugh!  Nowadays I am much calmer about it!

[2013]