Nov 25, 2012

7000 Bracelets for Hope: "hidradenitis supppurativa" HS Disease

 When Susan Kennedy of Sue Beads shared that Lisa James (Manager of Community Development for Global Genes/Rare) asked her to host a blog hop, as they were in need of at least 40 bracelets right now, I was excited to participate in two ways: sharing as an artist creating a bracelet and sharing abut my experience as a Global Genes 7000 Bracelet recipient.  

Global Genes 7000 Bracelets for Hope: the beautiful bracelet I received! The artist is unknown, but so appreciated!

I have Verneuil's Disease, or HS. It is so rare, and orphaned, it doesn't actually have a name, although we HS sufferers have found each other because of the internet and worked very hard to connect despite not having an "official" disease name, just the name of a symptom, "hidradenitis supppurativa". The disease was first reported in the 1800's by a French physician, Verneuil, and in many European countries "Verneuil's Disease" is another name for HS.

Although I've been diagnosed with the debilitating and severely painful disease for over 15 years, I've been suffering for many, many more because rare diseases are so difficult to diagnose. Rare diseases are "orphan" diseases -- meaning no pharmaceutical company has picked up research for the disease because there simply isn't enough money to be made taking on rare diseases. Without pharmaceutical company research, rare diseases go un-researched, and are thus completely unknown to most doctors. One of the surveys I took as a recipient in the 7000 bracelets for hope campaign focused on diagnosis. It was comforting to participate in a medical questionnaire that understood inherently the many number of doctors it might take for diagnosis, and asked important questions about what kind of doctors actually helped to diagnosis the disease. This kind of interest and serious advocacy by Global Genes is such a relief compared to the usual invisibility and marginalization HS sufferers and those with other rare diseases experience.

My beautiful Global Genes bracelet gives me STRENGTH from HOPE

A serious factor in rare diseases is no pharmaceutical company interest means no medical research which means no cure. But it also means no treatments, no relief to suffering, and subjecting oneself or one's family or children to risky shots in the dark. As someone who has learned through the years to be assertive and to be an HS advocate, I thought most of my serious medical scares were behind me until this past week. I encountered an E.R. physician who simply would not hear me nor my spouse about what to do! And while I don't want to go into details because this campaign is about HOPE,  his ignorance and refusal to listen to us as "ordinary" persons -- along with the lack of information on my rare disease -- seriously put my life in jeopardy. I'm still recovering from a very debilitating flare and the terrifying, powerless experience of emergency medical "treatment" -- or lack of treatment, or mis-treatment at E.R  (while my "safe" doctor was away for the Holiday) but the experience brings to center the vital importance of rare disease awareness: the arts, community, non-profit organizations such as Global Genes, and powerful base-root movements are imperative to those who need medical solutions, treatment, and life-lines.

                                 "HS Life - Series 2 (W.I.P.) - Sketch - The Cure" by artist Alaric LaBrie.                                                 (Used with permission. Photo © Alaric LaBrie. All rights reserved. )                                                                                                                                                                                                                                   "Inspired by the recent events but not directed at anyone company or another in particular just letting my frustrations at the overall situation and lack of real meaningful options for HS suffers at this point in time.

It was my goal to show the desperation of our situations." -- Alaric LaBrie

  Desperation. Awareness. Hope.

The artwork of Alaric Labrie is deeply moving to many HS sufferers. Labrie's representations of living with HS are raw, honest, and urgent. Living with HS, or any rare disease, is often difficult to express in words. Sharing the severe pain and morbidity of HS with physicians, friends, lovers can be exhausting and extremely difficult. The language of the body becomes a medium of meaning; LaBrie's powerful art portraits of HS and HS sufferers confront the disease courageously while comforting those who suffer with honor and dignity. I highly recommend exploring all of Alaric Labrie's powerful, imperative art.

There's much work to be done. As I've gathered resources for my blog hop post I've realized the work is immense, and intense. I've just sat and cried and cried several times today thinking of it. And thinking of one of my daughter's having Stage one Verneuil's is frightful, and having lost my other daughter with Stage three is heartbreaking. So rather than make this an educational post about Verneuil's, or turn to the tragedy or urgency persons with rare diseases are faced with; rather than posting and listing groups and resources for HS as I'd planned, continuing to work to "end" the disease -- fighting -- I'm going to just be gentle with myself, let my body continue to recover, and let the arts, the power of creativity, the energy and power of connection move and empower today.

Ombre blue silk and satin woven Swarovski crystal bracelets are simple, yet soft.

I created two simple woven stack blue bracelets with Sherri Stokey's "Easy Macrame Stack Bracelets" tutorial. They are soft and comfortable, which I thought might be soothing for some recipients, and the sizes may work as a parent - child set. The gorgeous Swarovski crystals sparkle brilliantly.  In addition, I may also wire wrap and create a more dramatic blue sari bracelet, like my Humblebeads Bare Branches jewelry, in addition to the crystal bracelets woven in silk and satin. 

My Humblebeads Bare Branches jewelry ensemble becomes a necklace or bracelet

I'll be sharing more about my story and my Bracelet of Hope at the Global Genes website. If you would also like to create and donate a bracelet, or if you would like to request one for yourself or on behalf of a loved one, please contact Global Genes Bracelets of Hope.

This is a blog hop :) Enjoy the many bracelets of HOPE created for Global Genes by the following artists:

Toltec Jewels is an author by day, jewelry maker by night. Her literary work is housed by the San Fransisco MOMA and is published internationally in popular magazines, literary quarterlies, and university publications. She has won a number of awards for literary and jewelry arts. She is happiest making handcrafted jewelry with her entire family, snuggling with her doggies and grandkids, sewing, singing, reading, and learning jewelry techniques. She is the host of Jewel School Friends, a community of expert and emerging artisans taking inspiration from each other and Jewel School. Join her on Facebook for networking, fundraising for Beads of Courage, jewelry making challenges, contests, give-a-ways and of course, cool beads and jewelry!


  1. Such a moving post thanks for sharing your insight and some lovely bracelets

  2. Thank you for sharing your story! It reminds all of us of the humanity that lies behind the reason for this hop!

  3. What an informative post, thank you! Lovely bracelets too

  4. Thank you so much for bravely sharing your thoughts and perceptions as one of the many touched by these "orphan diseases", Rita. I hope this hop is just the beginning and will cascade into much better understanding of the difficulties you face, and the power of creativity to overcome those difficulties!

  5. Thank you for sharing your story. It is wonderful to hear not only about someone in the "orphan" community, but also about your receiving your own bracelet. It really made participating in this blog hop more meaningful for me.

  6. Thank you for sharing your story - I cannot put myself in your shoes. I wish you peace and health. And, your bracelets are beautiful.

  7. Thanks for sharing your story. The bracelets you made are beautiful ;)

  8. You are by far one of the most beautiful people I know, You just
    shine. I love you in every way.
    xoxox jean

  9. Thank you for sharing your story. I'm so glad Sue had this blog hop. And of course, I love the bracelets :)

  10. Thank you so much for sharing your story, and the bracelet you received, as well as the artwork, your pain, and the beautiful bracelets you made! You are in my thoughts and prayers! It's really such a shame when doctors don't listen to "ordinary" complaints, but when there's something like yours that they just don't believe, it incredible...

  11. Thank you for sharing your story. It hits home even more when someone that I consider a friend has benefited from this wonderful organization.

  12. Actually it did end up being an educational post as I had to read up on this horrible disease. I will be sending you healing energy on a daily basis in hopes that it will help. Also could you recommend a good charity that is working with it?

    Brightest Blessings upon you dear one

  13. What a wonderfully stated post. If we are not our own advocates in our health care, so many things can happen.

    Thank you for being such a positive person. I always find great comfort with you the times we have chatted.


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