Questions & Answers About Hunter's Syndrome

How rare is Hunter's Syndrome?

Since Hunter's Syndrome affects on average every 1 in 150,000 males, there are only a few thousand people in the world affected by it.

What are the major medical complications you've dealt with because of Hunter's Syndrome?

Whew, boy that's a long list. I'm so grateful to be alive! Since it affects every cell in the body, let me just give you a bullet point list of some of the complications I've dealt with over the years that may be linked to having Hunters:

  • Frequent ear infections
  • Major hearing loss
  • 3 hernias, 2 inguinal one on each side, and 1 umbilical
  • Heart murmur
  • Fatigue/low energy
  • Prolonged recovery time from exercise and illness
  • Carpel tunnel 
  • Leaky heart valves.
  • Reduced lung capacity (down to 70%), difficulty breathing
  • Trachael stenosis (narrow airway)
  • Sleep apnea
  • Kyphosis 
  • Scoliosis
  • Stunted growth
  • Reduced range of motion and mobility (crooked joints)
  • Knock knees
  • Hydrocephalus
  • Enlarged liver and spleen
  • SIBO (small intestinal bacterial overgrowth)
  • Spinal Stenosis 
  • Skin lesions
  • Reduced immunity
  • IBS
  • Leaky Gut
  •  Enlarged adenoids
  • Dental malformation
  • Overweight
  • Hypertension
  • Anemia
  • Jaundice
  • Coarse skin and facial features.
  • Depression and emotional challenge
  • Low Self-esteem

How did you get Hunter's Syndrome, was it genetic?

While Hunter's Syndrome can be passed down genetically, nobody in my family had it before me. It is what is called a mutation in my body. (X-Men Anyone?)

I've heard of some people with conditions like yours being in pain, are you in pain all the time?

I am blessed to not be in pain as much anymore. Have I been through a lot of pain? At times, yes. But now, unless I move or eat in a way that I shouldn't or do something stupid, I am mostly pain-free!

Is there a cure for Hunter's Syndrome?

Unfortunately, there is no cure YET, but I do receive a weekly infusion of an enzyme replacement that halts the progression of the disease.

Can you tell us more about your treatment?

Absolutely. I'll pop a picture below this question for you to see, but essentially it entails me getting accessed with a needle through a medi-port, (a small plastic disk) on my chest. Like an I.V. this port allows me to receive my medication which a mechanical pump infuses through the tube into my body.

This infusion takes about 3-4 hours start to finish. But hey, it gets me to sit my butt down and do some work!

What is the biggest lesson you've learned from having Hunter's Syndrome?

Hmm.... Good question. I would say that more than anything it has taught me gratitude and to take responsibility. Being grateful and taking responsibility for our health, the way we behave and our the way we live is the most precious gift I have learned. 

Where can we go to find out more on Hunter's Syndrome?

For all things Hunters and other related conditions just go to the National MPS Society's Website by clicking here.