I have this skin condition called Melasma or Pregnancy Mask. It’s a condition that often develops during pregnancy or while taking birth control and it brings hyper-pigmentation to the skin, generally causing brown splotchiness. Some dermatologists say it’s caused by sun damage.
I wrote this cool little article on melasma last year called Can a Leopard Change Her Spots? That article has transformed into something I never expected – becoming a board where women from all over the world can share what they know about melasma with 500 comments. The ladies report on which products work to fade the melasma or which products or regimes, laser treatments they try which didn’t work. The participants save their fellow melasma sufferers some money and share their frustrated body image issues with each other.
It is to these sisters of mine that I want to talk to today.
“That’s not melasma,” my doctor recently told me. “That’s bronzing of the skin caused by too much iron in your liver, that’s a symptom of hemochromatosis. It should go away when we bleed you.”
“Really?” I asked.
“We’ll I can’t promise. It should. We’ll see.”
The symptom of my condition was staring me in the face every time I looked in the mirror – I missed it. My doctors missed it. We all knew I had it.
I have hemochromatosis. I’ve known I had hemochromatosis for 10 years. I’ve had hemochromatosis the whole time I’ve been treating my melasma that coincided with my pregnancy, which coincided with my not treating my hemochromatosis. My OB/GYN, the doctor I was seeing during pregnancy and right after, called my skin condition pregnancy mask (which is the layman’s term for melasma). The timing and symptom seemed right. He knew, of course, that I had hemochromatosis, but he did not know that a symptom of hemochromatosis looks very much like melasma. I haven’t seen my hemochromatosis specialist since before that pregnancy.
So here is what I want to say to my sisters out there who are treating their melasma, spending tons of time and money and emotional energy, and not seeing results – get tested for hemochromatosis.
You may have hemochromatosis. You may be treating the wrong condition. Your skin may be a symptom of something that may, in fact, be life threatening.
What is it?
Hemochromatosis is a mutation of the HFE gene. It’s an inherited disease. There’s nothing you can do to prevent it, nothing you do to cause it, and there is no cure. Around 8% of the population has this genetic condition.
By definition hemochromatosis is iron saturating the liver. Iron doesn’t leave the body properly in patients with hemochromatosis.
Iron is necessary for a healthy life, but too much of it sits in the liver and poisons it and other organs.
There is treatment.
The treatment is to remove blood from the body, giving blood.
They used to use leaches, now they use needles.
Untreated, hemochromatosis can be life threatening.
Women rarely find out they have hemochromatosis prior to menopause because they naturally rid themselves of just enough iron to mask the disease through menstruation, pregnancy, birth and lactation. That’s also the reason I hadn’t been to the doctor in a while – my body was using gestation, birth and lactation to rid itself of iron. Now the baby is over 2 and it’s time to start being bled again.
If you do not discover you have hemochromatosis and it goes untreated there is a high risk of liver disease, heart disease, diabetes, and others.
If you find out you have it early enough and it is properly treated, those who have hemochromatosis will live a long and healthy life.
I found out I had it in my 20′s. I am lucky. I found out in such a lucky way, after being misdiagnosed with both depression and mononucleosis. My doctor was trying to get me to up my anti-depressants.
“I am not depressed, I’ve got a great job and I’m happy about my life. I just can’t stop sleeping. I am so tired I could sleep 20 hours a day,” I told him. “Maybe I’m anemic, I read about exhaustion from anemia in a magazine,” I told him.
“If you rub real gold on your arm and it makes a black mark it means you’re anemic,” I explained as I showed him the black marks from my ring.
“That’s an old wive’s tale,” he said.
“Let’s bet on it. Test my iron levels. I bet I’m anemic,” I challenged.
The quirky bet with my doctor saved my life. I was not right. I was not anemic. But, I somehow, someway – by a miracle really – had asked for the right test after reading an article and illustrating an old wives tale. The test I requested showed dangerously elevated Iron & Ferritin levels. My liver biopsy tested positive for hemochromatosis.
This could be your quirky moment and this quirky moment could save your life (and treat your skin condition).
If you have melasma that doesn’t seem to respond to treatment, please, get a test for hemochromatosis. What you have previously seen as an emotionally frustrating skin condition – could shift into the symptom that points to a diagnosis that saves your life.
Wouldn’t that be a miracle – a shift in perception?
The best way to find out if you have hemochromatosis is to test for the HFE gene. You can ask your doctor to order this lab test if you have great insurance.
The American Hemochromatosis Society website recommends finding out you have this at home, without involving your insurance company. This is a serious diagnosis that could adversely affect your future insurability, they warn.
You can do the lab test from your home through a company like HealthCheckUSA. Just take a sample of your own cheek with a swab and send the results in to find out if you have hemochromatosis. It costs around $200.
If you have hemochromatosis you’ll need to find out your Iron and Ferretin levels with another lab test, Iron Profile, for around $50.
If your lab results come back with dangerously elevated Iron and Ferritin levels you’ll need to be monitored by a doctor and undergo more tests to make sure your vital organs are undamaged.