About my brother

My younger brother and I have always been close. He always looked up to me and I was the first person he would come to speak to when he wanted to talk. I'll refer to him as "K" through-out this article. K was just

13 years old when he was diagnosed with Polychondritis (around 6 years ago), something I had never even heard of at the time. He was a very quiet and reserved young man who liked to keep to a small circle of familiar faces. I remember when I used to give him piggy backs around the supermarket isles when we were younger and he told me he wanted to marry me haha. He had a little moustache on his top lip that he fussed over and my family and I used to tease him about it and call it "fluff".

The trigger

My brother K had been followed home several times by school bullies who would throw rocks at him or chase them on their bikes down the road. The bullies would intimidate him, call him names, swear at him and even threatened to burn our house down once. I managed to catch one of them in action while cleaning out the garage so chased them down the street with a 9 iron, they weren't so tough then!

The following day K came home with a nasty burn on his arm, the size of a bar of soap. I asked him what happened and he told me that someone had given him a "smiley". I had no idea what this was so I asked him to explain it to me. He said that a smiley was when someone heated up a lighter and then placed it on your arm which burnt a smiley face in to your skin and would make it scar. I asked him how he could let someone do that to him but he said that he didn't know it was coming. One of the bullies had sprayed him with deodorant first and his arm burnt really badly.

We took him to the doctors because it was quite severe and tried to speak to the school principal. The kids involved were sent to 3 days detention (wow big punishment!) but we were hardly surprised, the school had a poor reputation to begin with. Soon K's arm turned all pussy and green and we knew that it was incredibly infected. It took quite a few visits to get treated. Just as it cleared up we thought everything would be okay.

Body shut down

After a few weeks my brother told us that he couldn't walk on one of his legs. We thought he was just making it up, because it looked fine to us. He spent the day in bed and then the next morning cried out for help. He was stuck, he couldn't walk! In just 2 days K was paralyzed in both of his legs!!

We immediately rushed him to the emergency ward, only to be sent home and told to rest his legs and come back if it got any worse. The following day he woke up screaming as he now couldn't move one of his arms. So we rushed him back to emergency and told them we weren't leaving without any answers. Finally they gave him a bed!

And that's when my heart broke for the very first time. I was someone he looked up to and spoke to about anything/everything and for the first time in my life I didn't have any answers for him. I didn't know what was happening to my little bro, my best mate.

Eventually he became completely paralyzed, his muscles had completely frozen stiff. We begged for answers and nobody knew anything. He was so embarrassed, he had no control over when he went to the toilet and needed a nurse to shower him. We would have to pick him up and put him in a wheel chair so he could go outside and get some fresh air.

The following morning K's face had swollen twice it's original size. He had bright red puffy circles around his eyes, they were heavy, droopy and he could barely keep them open. His joints had swollen and he could no longer feed himself. He was placed on a feeding tube. Doctors weren't sleeping at night searching medical journals all around the world and contacting the best of the best in order to diagnose. I remember the look on my little brother's face when the doctors told him he would die in a couple of days if they couldn't find the cause.

He had lost complete control of his body and organs. He was starting to go blind and the infection made it's way down to his vital organs and began shutting them down.

I remember thinking to myself  "my little brother is dying..." and I just lost control. I disappeared over 3 hours away and attended a church. I'm not even religious! But it's amazing what fear of the unknown can make you do. I didn't even know if it was going to work but I asked the church to pray for my brother, even though it wasn't my religion.

I traveled back to be by my bro's side and I wasn't going to leave because I knew that this could mean he was going to slip away, forever. I fell asleep in the hospital arm chair but was soon woken up by doctors running in to the room. They started running all of these tests, asked me to leave the room and were going back and forth frantically.

Diagnosis

They had officially diagnosed him. They had to fly a specialist from overseas and he managed to save my brother's life. The diagnosis?  Relapsing Polychondritis! We had to sign research papers and permission for photos to be posted in medical journals and everything as my brother at the time was one of the youngest recorded for the disease.

Relapsing Polychrondritis

I'm still not satisfied that I know the insides out about the disease but here is my understanding from how it was explained to my family and some websites to help others with some insight.

Polychrondritis is basically the inflammation and deterioration of cartilage and other tissues within the body. As much as I know, the cause is unknown but it is believed that major burns to the body can bring it's onset.  An additional belief is an existing immune system disorder. The average age of the onset occurs around 40 years of age so it's very easily over looked in young children and infants. Not to mention, extremely rare.

You can read more about Relapsing Polychrondritis here (click on introduction)

http://rpolychondritis.tripod.com/

Symptoms

The first of K's symptoms were redness, fever, pain in the joints. This then spread quickly to other major joints in the body, swelling and inability to use them. K's hands and legs then shriveled up as if he were an old man (think of mr burns from the Simpsons hands). His eyes went puffy, started to lose his eye sight, his ears became floppy like donkey ears as the disease ate away at his ear cartilage. He started to become deaf, lost control of his bowels. He was throwing up constantly, then had hoarseness coming from his coughs as the disease started to attack his vital organs. I remember hearing him wheezing like it was extremely difficult for him to breathe.

You can read about some of the most common symptoms here:

www.medicinenet.com/relapsing_polychondritis/article.htm

Treatment

The sad part about my brother's illness is the fact that he will have it for life and will always have to monitor it. If he doesn't he can end up permanently disabled or even die. There are several types of treatments available however K's personal treatment is steroids.

You can read more about treatments here:

emedicine.medscape.com/article/1065936-treatment

www.accesspharmacy.com/content.aspx

Result

After my brother was released from hospital he was given a walking frame. It was unclear whether he would fully recover and gain full control of his limbs again. I used to hear him sobbing in the middle of the night as well as hearing the sound of "clank...clank...clank" as K would try to make his way to the bathroom during the night and quite often didn't make it in time.

Luckily within a few months, he could move around with his walking frame. It's amazing how one day someone you love can be days away from staring death in the face, wheeling them around in a wheel chair, unable to go to the toilet, or even eat for themselves, to using a walking frame to what he has become today.

Today I am very happy to announce that K is built like an absolute tank and this experience has changed his whole life. He won't let anybody bully him around and he certainly doesn't take his legs for granted. He is extremely athletic and very handsome. My shy young brother who we used to tease about a bit of bum fluff on his chin is now a grown man who makes us all proud.

Sorry I couldn't produce any images, many were copyrighted or in medical journals.