- She was so sick that she didn't feel good enough to play with either one of us
and she always needed to be alone.
She didn't really want to interact with anyone when she was so sick.
- Usually, antibodies protect people from disease.
But in Emma's case, she has some antibodies which have gone rogue
and are attacking her own body.
- There are fewer than a hundred cases in the world reported of this condition
and even fewer in children.
- I'm Emma Hendrickson, I'm 15 years old and I'm from Guilford, Connecticut.
- I first met Emma in my neuroimmunology clinic, she came to me with a constellation of symptoms.
She had this burning pain in her leg,
her leg would get very swollen.
It would make it very difficult for her to walk.
- Good morning, Emma! - Good morning, Dr.
- Although blood looks just like a red liquid, it's in fact made of different components
which include the red blood cells that make blood red,
the white blood cells which are the immune system,
the platelets which stop bleeding
and plasma which is a clear, yellow-ish fluid which contains antibodies.
They make sure that infections aren't allowed to spread very far in our bodies.
- Apheresis literally means to carry away.
When we perform apheresis procedures,
we are removing a component of blood from patients who have a disease in order to improve their symptoms.
- These are the ports that are in my chest and run to my heart.
You have to have two IVs for each treatment in your veins
get weak, so having needles in your chest is not fun at all.
- The preparation of the vascular access takes about 30-45 minutes
and after that, she will be connected to the automated apheresis instrument.
- This is me for the next hour.
- When we connect this machine to Emma,
it will bring a small portion of her blood into its inner-chamber
which contains a spinning bowl, which is able to separate her blood into its components.
The plasma that's collected during the procedure is replaced with albumin,
which is a blood protein that's manufactured from plasma from healthy blood donors
and once her procedure is complete,
she receives an infusion of a medicine called IVIG
which lasts an hour or two.
- Afterwards I'm really, really tired,
'cause it tires you out so much.
But then I normally go home and have a nap and just rest
and by that night I feel like a totally different person.
- Right now, Emma gets pheresis proximately every ten days.
When we first started, we tried to go about a month
and her symptoms just didn't allow it.
It's not a cure, so it's just like bailing out a boat.
So you remove antibodies or anything that's making Emma sick
but as long as her body is continuing to make these substances
she will remain sick.
If Emma didn't have access to apheresis,
there would be no way to offer her the relief
of actually removing these substances that have already been manufactured by her immune system.
- What we really need to do is figure out why these antibodies are being made in the first place.
But until then apheresis will remain an important component of Emma's treatment.
- Getting apheresis has definitely changed my life.
It's not only made me be able to get off crutches and be able to run around
and join the softball team.
It's given me back the ability to just be like a normal teenager and do everything that everyone else does.