down syndrome awareness month

Portrait of Sophie – Studying Trisomy 21 is complete. Amy, Sophie and Annabelle come to see the drawing in person. My husband, eager to meet Sophie, is also present. We gather in the studio and enjoy pizza.

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Part of me wants to write about the conversations I have with people about this study, about Sophie, and about Down syndrome. It affects more families than I can know when I begin the work.

My hairdresser, for example, has a brother-in-law with DS.  She tells me about his mother who advocated for him. He could have been institutionalized considering the era he was born into. Instead he grows up at home alongside his brothers and sisters. Now in his sixties, he lives in an apartment that he shares with a roommate. I listen, ask questions and wonder why I didn’t know this before now.

I’m in a waiting room this week and come across a magazine dedicated to Down syndrome. Has the magazine always sat here and only now do I notice it? I read an article about research and funding that reminds me…

I know someone who writes (beautiful poetry) and she also happens to research immunology. A few years ago we had a conversation about the immune system and rheumatoid arthritis (her area of study). I contact her and ask what she might know about Trisomy 21 and the immune system. Arpita responds generously.

(A note: If you follow my work, you know I only focus on details directly related to Sophie. This post is more general education about DS, in particular it is about the immune system.)

Trisomy 21. If you say these words to a complete layperson, they will find it lyrical, enchanting, exciting and even beautiful. But then you tell them what it is, and their smile fades.

Not a lot of people know that T-21 can have immunological abnormalities associated with it. As you rightly pointed out, not much info is available regarding the immune system in DS. It’s only now that we are getting an idea of what’s going on in these patients.  The immune system develops, but poorly. There is reduced numbers of cells of the lymphoid system. Those cells that do develop respond poorly to antigens and are unable to travel to site of infection or injury to do their thing. The cells divide poorly when they are activated by an infectious agent. Some cells are supposed to secrete antibodies of a particular type when they are activated and this process is also impaired. And thymus, the organ in which T lymphocytes develop, is rather small and underdeveloped in these patients, suggesting that the immune system doesn’t really get a chance to develop from the very onset. Again, the fascinating thing is that the immune system is not completely broken; it is just not strong enough to protect the poor child. 

I thought I finished the heart and lung area but with Arpita’s words, I come back to indicate the thymus gland (bright blue circles atop the heart – the lymphatic system strings throughout the body). I understand from a previous study, the typical thymus is larger when one is young and becomes smaller as one ages.

A body worker once told me it crystallizes suggesting the change a positive.

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Arpita continues…
There are other indirect causes postulated for the immunological abnormalities. These patients have poorly developed or malfunctioning digestive system, which makes it hard for them to assimilate nutrients. This could lead to deficiencies causing immune perturbations. Also, children with DS most commonly experience lung and heart infections, and many groups claim that this is because the architecture of the respiratory system is abnormal and the natural barriers which filter out infectious agents are less effective in such a setting.

What I find fascinating about DS is that despite the presence of a purportedly underdeveloped immune system, these patients are susceptible to autoimmune disorders. It actually makes me mad, you know…why would an already weak immune cell waste its resources in fighting its own body, when it should be fighting invading pathogens? Sadly no one knows why it happens. My guess is that it has something to do with the abnormal architecture of the organs where the immune cells develop early on. Events in thymus and bone marrow shape the repertoire of immune cells ensuring the survival of cells which are not only most potent, but also which will almost certainly not react against the body. If these organs have developed poorly or are missing certain vital components, this will undoubtedly affect the development of the immune system.

Are you familiar with the process by which immune cells move within the blood, within organs and across tissues? It is fascinating and beautiful documented through images and time-lapse imaging. It is an intricate dance of communication between molecules. There are bits and pieces of information that this movement and migration ability of immune cells is impaired in T-21. Again, no one knows why this happens, but lack of proper direction and mobility can significantly impair immune responses.

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Portrait of Sophie – Studying Trisomy 21, Mixed media on Paper, 80″ x  45″

So…I ask questions, research, and present what I come across and never know what’s to come next. Arpita and I end our conversation but not until she expresses something I take for my self.

…there is so much that we don’t understand about the human body, in particular how different parts communicate and intertwine with each other functionally. I think part of the reason is that because as young students we are encouraged to accept dogmas and hold on to them rigidly.

However, someone like you, an intelligent person with no dogmatic notions of the medical field, can look at the existing information with fresh, unbiased eyes, and hopefully help the rest of us to see important clues that we have missed. …good luck with your drawings.

I can hope. October is Down Syndrome Awareness Month.

The web of life…today I understand better everyone brings something to the table.


I want to take a minute to thank everyone who helped with the research for this work. In particular those of you that helped me gather and understand the information so I could work with it and write about it. Thank you Amber, David, Dominique, Arpita, Elisa, and Amy. And thank you Sophie, for the spirit you bring to the picture.

For information about Amy Silverman’s book visit the website→ My Heart Can’t Even Believe It

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Big sister Annabelle taking a long close look at the portrait.

4 thoughts on “down syndrome awareness month

  1. Beautiful.

    Do you have a plan to show this work? An artist talk/book talk would be a wonderful combination. If something like that arises, I would very much like to attend, if possible.

    Really great work, all of it.

    Maria

  2. I am looking for a venue to show this work and all the other anatomy studies I’ve completed.

    Artist talk/book…that’s something to consider. I have been thinking about the latter. I will keep you posted.
    Thanks Maria.

  3. Fascinating! I hope you get to bring the gut-brain axis alive through your art just as well.

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