A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Thursday, October 14, 2010
Still's has a Dragon; Lupus has a Butterfly
Still's Disease has a red dragon and Lupus has the purple butterfly. We all know ticks carry Lyme disease and they have chosen lime green for awareness.
What do genetic diseases have? Often you'll find photos of the actual genetic test showing the genetic default in the chromosome. To me, that's like finding a gold nugget in a stream. Real, solid proof. So many of us don't actually ever get that proof.
Other times you'll find drawings or diagrams about how the mutation is affecting the body. No one has yet to select an animal, nominate a colour or express interest in visualizing the disease for those affected.
The Arthritis Foundation of NZ chose orange and the orange fruit as their symbol -- bright, appealing and dynamic. Anyone with arthritis in their hands knows how hard it is to peel an orange. I do it just to prove to myself I still can, no matter how much it hurts.
Genetic Diseases are invisible to most. I look normal, often 'healthy' with a rosy glow (that's the fever folks!) and yet, inside, I am vastly different from you. But you can't tell. If I wore a pin or a t-shirt, would you stop and notice? Would you be able to tell then that I was different?
If I were to design this symbol, this 'look at me because I AM sick' visual, would I want it convey the seriousness of the illness? Or courage? Or determination? Would you choose to show how strong you are, even on days you just want someone to make you a hot cup of tea and put you to bed? Do you choose to show your vulnerable side? Would people misinterpret the vulnerable as weak or attention seeking?
Most people I have met want to be seen as strong with the weakness to the side. They want people to know they are sick but not different. Strong but weak. Brave but vulnerable.
I can't actually put all those words into an animals, shape or colour. If I had my daughter choose it would be a rainbow because that's what she's interested in right now, and well, the wonderful gay community beat us to that.
It was jokingly suggested to me to make buttons or pins with a giant Hugh Laurie face on it. You know, a sort of giant Dr. House staring into your soul as only he can do. Because we all know that when you see Dr. House it's going to be ironic, dramatic and rare.
He's a good looking guy, so we might just sell a few!
I think I'll go with the traditional DNA stack. Maybe long silver lines for the Helix and gold bars for the chromosomes? Maybe put a shiny stone or piece of metal where your genetic defect lies?
The DNA Store has a variety of existing designs so it'd be hard to not copy anything they offer.
I think, should I see someone wearing a DNA lapel, I would instantly assume that they were a biologist or truly a mad scientist, so I'm not sure my message would be getting across.
There are quite a few creative types making DNA strands out of coloured beads but I associate beads with children's cancer and the beads they 'earn' as they go through treatment. Those beads are so special, as are the wonderful children who earn them.
I can't go with Pandas or puzzle pieces. Pink and Red are out.
I'm thinking of going with a soft, furry white Yeti. Why not? The prednisone makes you go all grey and furry and as big as a yeti. Your mood swings can include a Yeti growl and you often want to be alone. And with those hot flashes, all that ice and snow would be welcomed!
See, he can even be cute!
This
or even this
Now, who wouldn't buy a Yeti pin?
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
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Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
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Familial Mediterranean Fever
* A good FMF Resource
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Autoinflammatory Diseases
* British Medical Journal PDF
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Rheumatoid Arthritis
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Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
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* Arthritis Foundation
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* Medicine Net
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* Genetic Disease Foundation
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* Rest Ministries
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* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
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Safety of Commonly Prescribed Drugs
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Other Reads
* What is Heartbreak?
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* International Baby Lost Mother's Day
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Memes
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Categories
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Blog Roll
- Be Careful What You Pray For
- Built in Birth Control
- Holy Pee Stick, Batman!
- Leaps of Faith
- Lupus Ranting
- Not Standing Stills Disease
- Recurrent Miscarriage
- Rheumatoid Arthritis Guy
- The Healing Plate
- The Post Divorce Chronicles
- the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer
- Understanding Invisible Illness
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