Advocacy in Action

Guest Blog by: Jennifer Strauss.

Jennifer is a self-advocate who shares her insights and learnings with her community and encourages advocacy in others as well.

Jennifer allowed us to share this post she made on her social media:

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Sorry for the long post but I need to say this when it comes to my health and having Mosaic Down Syndrome. I know what is at stake for me and I take necessary precautions. I tell people I rather be safe than sorry.

Vision & Hearing: Trifocals at 3 and bifocals by 5 and contacts at 12. My hearing is pretty good.

I do not have heart issues but I do have high blood pressure. Heart issues could still happen for me.

I could develop things in the future like leukemia, Alzheimer’s and Dementia. My memory is pretty darn impressive on some things.

I have respiratory issues: mild asthma, sleep apnea and I have always dealt with shortness of breath regardless of how I am feeling. I have not had Covid but with getting the vaccinations and the booster, I have the antibodies. I could still get it but I hope I never do.

Bone and joint issues: Always has been a problem for me. Arthritis is common as well and I have had it since my early 20’s. My hips have given me problems as well. I did have surgery on my right hip to fix some issues and besides that, I injured it in 2016. Moving forward to May 2020, most of you know that I broke my ankle and it required surgery to fix it. Spending time at the assisted living/rehab place for therapy really did a number to me. 2021 the hardware was removed and I became active by riding a bike and walking. I am quite careful when I go on my walks into town or bike ride. Movement for me is key in order to not get stiff. I have no choice to walk with a cane.

Thyroid: Never had a problem but I make sure I get tested yearly.

Can not remember what else I am prone for but if I find myself going to urgent care/ER for whatever the reason when it comes to my health, I am just taking the necessary precautions.

I have had people say to me, ” There is always something wrong with you”. You know what, that really ticks me off. Until you walk in my shoes and also having a disability, keep your mouth quiet.

All and all, just because I have these problems does not mean one can say anything to me or to anyone. I am just trying to live my life the best way I know how.

Each individual with Down syndrome is different when it comes to their health. That is why parents strongly advocate for their child.

If you would like to be educated in Down syndrome and how it affects each person, talk to me.