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7 Questions to Ask About Autoimmune Diseases and Breastfeeding

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I often find it hard to get my head around autoimmune diseases. Then, I need to help a mother, a professional, or an IBCLC® exam candidate deal with autoimmune diseases as they relate to breastfeeding and lactation. Not easy.

Autoimmune diseases are not well understood in the medical community. I don’t pretend to have all the answers. But here are 7 questions you should raise about any of the dozens of autoimmune diseases you might encounter.

What’s the altered physiologic function?

Formulate a one-sentence description of what’s going on. For example, let’s take Graves’ disease. It occurs because of an increase in thyroid production.

If you know that, and if you understand the basics of how the thyroid works, you’re halfway to understanding how this disease might affect breastfeeding and lactation.

What is the effect on the person?

For a moment, let’s think about fibromyalgia.

 “Myo” means muscle and “algia” means pain. Therefore, we know that this disease causes widespread pain in the muscles of the body.

However, people who have fibromyalgia may have sleep problems, fatigue, and emotional issues. They will tell you that on some days, they have “fibrofog.” Learning can be difficult on days when they are experiencing fibrofog.

Each autoimmune disease manifests a little differently. And, the effects of one particular disease on one particular person may be different from another person with the same disease.

What is the treatment?

There may be a treatment. Or no treatment. Or an experimental treatment. Whatever it is, try to figure out what the treatment is, and how or if it affects breastfeeding and lactation.

Sometimes, it’s something as simple as using relaxation techniques. Therefore, these treatments could enhance milk production and let-down.

Other times, the treatment is a medication. I’d raise questions about the drug’s safety and milk production.

Are the medications compatible with breastfeeding?

This is a fundamental question for anyone who is breastfeeding.

But often, we have little information about medications that are prescribed for autoimmune diseases.

Some of them may be drugs in the experimental phase which have not been cleared by the FDA for general use. It’s highly unlikely that those would be prescribed during the childbearing cycle.

How does breastfeeding and lactation affect the disease?

In some cases, the body does better during lactation. An excellent example is multiple sclerosis (MS).

Research has shown that lactating women have a substantial period of remission from their MS. I can think of one case where a mother with MS lactated for more than 2 years, and had an almost complete remission during that time.

Here’s more information on treatment options for multiple sclerosis during breastfeeding and lactation.

What’s the impact of the disease on breastfeeding?

When I say “breastfeeding,” I mean the act of positioning, latching, and suckling a baby. In nearly all cases, the one who is breastfeeding is also lactating. The opposite is not true.

Hence, the impact of an autoimmune disease on breastfeeding probably boils down to these issues:

  • Positioning: positioning the baby so it’s comfortable for the person who is affected with the disease.
  • Handling: This is related to but not necessarily the same thing as positioning. The baby may be in a position that’s comfortable for the mother, but the weight of the baby makes it uncomfortable to re-position the baby as needed.
  • Pain: The best example I can think of is nipple vasospasm. (Also called Raynaud’s disease or Raynaud’s phenomenon.)

What’s the impact of the disease on lactation?

When I say “lactation,” I mean the physiologic process milk production and ejection. One who is lactating may or may not be suckling an infant.

In short, this is about how the disease will affect milk supply and let-down.

A few of these diseases are well-known for creating milk production issues. These would include Hashimoto’s thyroiditis and other hormonal reasons I discussed for low milk supply.

Others? Hard to say.

For example, you might assume that Sjogren’s syndrome would limit milk supply, because other exocrine glands are affected. (For example, tears and saliva.) But there’s no research to support that. And I know of at least one mother who was affected with Sjogren’s syndrome but never had a problem with milk supply.

Hence, don’t leap to conclusions.

Might you be asked about autoimmune diseases in your upcoming IBCLC exam? A few questions? One? None?

I have no idea! They ask what they want to ask!

But I’ve faced questions on this topic, and it’s certainly fair game. There are over 100 autoimmune diseases, and any could pop up on an exam as the key, or as a distractor.

If that happens, knowing the answers to these 7 questions will be helpful. I’ve created a list of what I believe are the 13 autoimmune diseases that are most likely to occur in a woman of childbearing age.

Download my free handout that lists those 13 diseases and start working on getting answers to the ones you feel uncertain about! Find the handout “Common Autoimmune Diseases, Breastfeeding, and Lactation” in the Insiders Club; log in here or register for access here.

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