Health Update: Jessa's Journey with Juvenile Dermatomyositis

*If you’re new here or don’t know the story of Jessa’s auto-immune diagnosis read this blog post first.

I feel like our family health updates have been few and far between lately… there hasn’t been any news to share, I take that as a positive as we have been in a stable place with both girls, praise the Lord!

Jessa is doing great! We are down to half her dose of methotrexate… and continue to slowly wean her off. She should be done by Christmas! Please pray for Jessa. She still struggles emotionally every week when it is injection night, anxiety is high leading up to it, and there are always tears. She knows there is an end but this weaning process is hard, she just wants to be done (we do too!). We also ask that her body will stay strong and she wont have to go back onto that nasty drug!

Jessa was diagnosed with Juvenile Dermatomyositis almost 6 years ago. Since then there have been some medical advances with the Myositis family of autoimmune diseases. Doctors can now do a blood panel that can see exactly what auto antibody is present to be sure treatment goes with the specific type of myositis since there are quite a few. 

As one article puts it, “Myositis-specific antibodies have also improved our understanding of myositis by leading to the identification of certain clinical patterns that help doctors understand how the disease might progress.

Recently Jessa had the auto anti-body blood panel done and we found out that she has a weak positive Anti-Mi2 antibody (see YouTube link and note at the bottom of the post for more info). This is classified as acute classic dermatomyositis, which is overall a good prognosis. This doesn't change the treatment but it does give us confidence in the current treatment plan and encourages us that one day, Lord willing, we will be off all medication and in remission. Please join us in praying for this!

When Jessa was first diagnosed she presented with more muscle weakness and some skin involvement. This lead us to believe that her muscles would be more affected long term and her skin was minimal. With the knowledge we have now from these results, we know this isn’t the case, over the last few years her skin has proven more difficult to get under control and with the antibody results we know this can be expected.

Again, we are thankful for what this journey has taught us. This is part of our testimony and we know it will glorify the Lord as Jessa grows up and shares her story.

Interested in learning more about Juvenile Myositis? Here are some resources:

This YouTube video explains all the auto-antibodies associated with the Myositis diagnosis, the first few minutes gives a great scientific explanation of this and description of Jessa’s type starts at: 14:20

More about myositis anti-bodies here: https://www.myositis.org/about-myositis/diagnosis/blood-tests/myositis-autoantibodies/