Diagnosed at age...

44

Started feeling symptoms at age...

44

What were your symptoms?

• Pain in joints
• Brain fog
• Memory problems

Describe your symptoms.

Sore hip and elbows were my main symptoms. Painful doing normal physical activity.

How did you discover you had iron overload?

Had a blood test for a spinal issue causing drop foot.

Iron panel results:

My ferritin was 4400 on the first blood test and 5200 at its height, saturation was 95%

Genetic test results:

One copy c282Y

Treatment plan from your doctor?

Phlebotomy every week, wasn't told about the not drinking until later hence the rise to 5200.

How did your family, friends, and peers react when you told them you have iron overload?

None of them had ever heard of it, I feel like a broken record explaining it.

Did you continue to experience any symptoms after your diagnosis? How do you feel today?

Initially the joint pain got much better. Hip has got worse and found that both hips are covered in arthritis and will need to be replaced, elbows are back feeling worse now, probably gonna get a scan on them now. Found my spine is covered in arthritis as well.

Do you have any tips or advice for others struggling with iron overload / hemochromatosis?

Get a scan on any joints that hurt as it will probably get worse.

Anything else you want to say?

Spread the word, it's not a death sentence.

Tell us about you.

I live in Bristol, I'm still active despite all the joint pain, you can live a normal life, think positive.