A strand of DNA next to a baby rattle.

Living With AxSpA, Deciding to Have Children, and Genetic Counseling

Having children was never my top priority in life. Being a teenager, talking with my girlfriends about life plans, we had different views. Most of them wanted kids for sure. I was more reserved about it, saying that I might consider it. But deep down, I did not have the desire to have kids, and many years later that is still the case.

Then I guess that was easy for me to decide whether to have kids whilst living with AxSpA. That doesn’t prevent me from thinking about how my life would be if I had kids. How would I cope? How would I feel? What would I have to let go in my self-care routine if I had a family? I remember when I started taking Adalimumab (Humira). The rheumatologist asked: are you planning to get pregnant soon? I was a bit surprised by this question. Then I realised that for the first time in my life I would be taking a treatment that could compromise a pregnancy.

Genetics and chronic illness

I think this topic can raise a lot of questions for a person living with Axspa that are difficult to answer. And I wonder how much support and specific advice is out there to help making this kind of decision. For instance, the genetics behind AxSpA is still unclear. We know that things go beyond the HLA-B27 marker, and this marker is not a clear YES or NO answer to the chance of developing the condition. However, the idea of inherited genetic background explaining the likelihood of developing an autoimmune disease is talked about.

My family history

There’s another autoimmune disease in my family, also rheumatic inflammatory but different from AxSpA. It’s also linked to an immune system marker, HLA-B51. We are not the only example of a family with several autoimmune diseases. This common genetic background shared between relatives, associated with potential triggers like diet, lifestyle, environment factors, are potential causes of onset of diseases like AxSpA. The hereditary aspect of such autoimmune diseases is more complex than one faulty gene with a straightforward genetic test to do. So how do we decide to have kids, with the limited knowledge we have on passing such disease to the next generations?

Excitement and worry

I have of course met people with AxSpA who have a family, some with siblings also living with the condition. I spoke to people around my age who decided to have children. I could see the expression on their face when they announced that they were expecting a baby, "a little AS baby" as one said. Behind the excitement of having a child, there was worry in their eyes.

I work on a group of rare neurological disorders called ataxias. Many forms are genetic; for each of them one faulty gene has been identified as causing the onset of the disease. To diagnose such conditions, you can take a genetic test, and you get a YES or NO answer. When people have such genes running in their families, they can have access to genetic counselling appointments, where they can ask questions and discuss family planning.

We need genetic counselors for AxSpA

Working on a helpline, I remember saying to people with ataxia that this is very much a personal choice and they could benefit from seeing a genetic counselor to have all the information they need in order to take their decision. But when you live with AxSpA, which kind of information is available to you? Do you have access to genetic counselors or other professionals who can advise? I realise how difficult that decision must be, for the hereditary side of things, and also for the management of the condition, considering a future life with children who will need a lot of attention, support, and care.

I care about people who want kids and wonder. I wish for us to have enough guidance and information about treatment and pregnancy. I think about the future generation of kids living with parents with AxSpa. Let’s talk about it. How have you been managing having kids? Are you wondering about having kids? I am sure there’s a lot to share.

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