Today is World Lupus Day and we would like to talk about breastfeeding with lupus. Worldwide more than 5 million people have this disease and nine out of every ten of them are women. Nutritionist Iria Quintáns Álvarez wrote this post, she is an expert in lupus as she suffers from this autoimmune disease herself. You can find her on Instagram @nutrienfamilia

Lupus and breastfeeding

Lupus is an autoimmune disease in which the body mistakenly believes it should ‘attack’ its own cells. Because of this, a whole range of symptoms can occur, which are very different from person to person. From skin rashes to fatigue, blog clotting problems, inflammation and joint pains there are several symptoms that affect each person differently.

Just as all breastfeeding journeys are different, all lupus cases are different 

I would like to mark the occasion of this day to demand better care during the postpartum period for people with lupus. Affected mothers need to be informed and accompanied during pregnancy and the beginning of breastfeeding with the sensitivity that is required to understand this situation.

We often talk about the influence of the environment in making decisions about breastfeeding. But in some cases, it is not only the environment that conditions these decisions. A chronic disease like lupus can make you doubt your abilities, make you feel that you are not enough and that everything is a constant struggle.

When I thought “I will breastfeed if I can”, I was not thinking about whether or not I would have breastmilk, nor was I doubting whether my breasts were the right size to breastfeed my daughter. Two things especially concerned me about breastfeeding. The first was whether I would be able to hold my daughter in my arms.  If my arms would hold more than 3 kg of weight in my arms to be able to breastfeed her. If it would increase my fatigue or if I would endure the pain of her little body rubbing against my skin suffering from the disease. The second thought was whether the medication I would have to receive would allow me to breastfeed. All my doubts were resolved at 37 weeks of pregnancy when I gave birth.

Soon after, I was in a hospital bed and was able to hold my daughter with the one arm that did not have the intravenous medication canula in it. I wanted and deserved to be healthy, but I felt that my daughter needed me too. And today I know that making breastfeeding visible in this setting is also promoting breastfeeding and putting an important issue on the table: women deserve to be backed up by science in the decision to breastfeed our daughters and sons.

When you have to take medication and breastfeed, you realize that there is not enough research on wheater it is safe for breastfeeding. Pharmaceuticals consider it too risky and advise against the use of a number of important drugs. This ‘precautionary principle’ has contributed to the lack of evidence on dosage, safety and efficacy during breastfeeding.

When my medication for lupus treatment had to be changed, I did not accept the ‘there is insufficient data to be able to guarantee its safety’. I researched the evidence on my own and the studies that had been done, I asked other professionals with sufficient knowledge and who were updated on the topic, and I talked to different doctors. With all of this, my decision was to continue breastfeeding my daughter for more than three years. I can’t say that I wasn’t afraid, because no one offered me 100% certainty. I had decided to take this step, but no one even considered the possibility of doing a study on my personal case that would provide more data and that could shed a little more light on this issue.

As I said at the beginning of this post, all lupus cases are different and all individual situations are different, so it is always important to get informed in each case individually by a specialist medical team. But I hope that women who take medication for this type of pathology can have much more information and research about the risks and implications for breastfeeding in the future so they can make a more free and informed choice.

So, please, regarding lupus and breastfeeding, “may science be with us”!

If you have any questions about pregnancy, maternity and breastfeeding, download the LactApp app for Android or iPhone for personalized answers.