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A Special November Thanks

November always puts gratitude in our hearts. While we're grateful for our supporters year round, we extend a special thank you to those who have supported Sick Cells in 2017 and this Giving Tuesday. 

This month, we are continuing our Faces of Sickle Cell Disease campaign, sharing highlights from the American Music Therapist Association Conference and giving details about travel stipends to DC from the EveryLife Foundation for Rare Disease Week in February and more! We'll highlight a story from a Sickle Cell Warrior and provide some news you can use, but first...

A Minute with Marqus

This month, Marqus is excited about his new custom-made pair of shoes! Marqus has had leg ulcers, a common complication of SCD, since 2013. Because of the ulcers, he’s worn padded shoes. Now, insurance is covering a custom-made pair of shoes designed for diabetic ulcers.
I haven't worn actual shoes since 2013. I've been wearing these pillowy, Velcro shoes designed for diabetic leg wounds. They're made to breathe and not put pressure on the actual ulcers. They're also easy to get on and off. Now that my wounds are healing, I can fit into regular shoes. I still have to be careful because the skin at my ankles is delicate. I also don't want my ulcers to open up again. So, my podiatrist prescribed me custom-made shoes, and they're covered by insurance.
There’s limited research on how to care for leg ulcers in people living with SCD. Some research says in the US, 2.5 -25% of SCD patients have leg ulcers. Other research suggests that globally, 75% of SCD patients experience leg ulcers. The common misconception is that they’re like diabetic ulcers. They’re not the same, and boy do they require different care. The good news is that we were able to prove to my insurance company that leg ulcers are a complication of SCD, and they covered my new shoes!
When I went to get fitted for the custom-made shoes, a lot of the therapists did not know I had sickle cell. They asked me if I was a diabetic because people with diabetes get lower leg ulcers. I explained that it's common in sickle cell disease too. They were very kind and definitely learned something new that day. 

The new ones will be leather with deer hide as the insert. They look pretty good, but they are expensive. Insurance will reimburse me after I pay for them out of pocket. The total cost will be about $1000 for a pair of shoes. Fortunately, I can get the shoes this month because I’ve reached my deductible for medications and doctors appointments. It’s a tough gig trying to choose between medications, bills, and shoes. I’m grateful to have a good support system to help me out when my health becomes really expensive.

Music That Heals

Sam Rodgers-Melnick, music therapist and artistic specialist for Sick Cells, recently attended the 2017 American Music Therapy Association National Conference in St. Louis, MO. Sam was invited to speak on his work with adults with sickle cell disease and his ongoing research into the effects of music therapy on sickle cell pain.
Sick Cells' Artistic Specialist, Sam Rodgers-Melnick, presenting at the American Music Therapy National Conference 
 Sam’s presentation included a “Sickle Cell 101” demonstration to explain the hemoglobin S gene and how it leads to the sickling of the red blood cells and sickle cell complications. Sam then focused on the complex nature of pain in sickle cell disease, including acute pain crises, AVN, neuropathic pain, and other chronic pain syndromes that emerge in young adulthood.

When pain is this severe and complex, pills are often not enough. Sam emphasized the importance of music therapists in addressing the physiological, emotional, psychological, and spiritual pain that adults with sickle cell experience. 

A publication on Sam’s work in sickle cell pain is forthcoming. Sam hopes to expand his research to other sickle cell centers and engage music therapists nationally to address the needs of adults with sickle cell disease.

Kickball for Sick Cells!

“We ride for sickle cell” was the chant heard at Soul Cycle on Thursday, November 9.  Every year, Stonewall Kickball league, an LGBTQ+ and ally community-based nonprofit sports league, encourages their teams to host a charity event. Stonewall believes that organized communities have the ability and responsibility to support others in need. This year, one of the teams chose to support Sick Cells and raised $1000 in one hour of Soul Cycling. Thank you, kick-ballers! 

Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill is February 25th through March 1st, 2018 in Washington, DC. EveryLife Foundation, a rare disease advocacy nonprofit, is offering travel stipends so more advocates can attend this important week. Those living with and affected by sickle cell disease are eligible to apply for travel stipends to attend the events.

To learn more about Rare Disease Week, join the EveryLife Foundation for an informational webinar on December 6th at 2PM EST. Rare Disease Week brings the entire rare disease community together in order to be educated on federal legislative issues, share their stories with policymakers, and meet other advocates.

Stipend awardees in Maryland and Virginia will receive $400, and awardees in the rest of the continental USA will receive $800. Stipend awardees in Alaska, Hawaii, and Puerto Rico will receive $1000.
A rare disease is defined as a disease affecting 200,000 Americans or fewer. Sickle cell disease is one of the most common rare diseases in the US. If you can't make Rare Disease Week, you can submit your Rare Story that will be shown to Members of Congress during the week. Be sure to submit by February 11, 2018.   

The Orphan Drug Tax Credit 

The National Organization for Rare Diseases (NORD), recently released a statement addressing the proposed repeal of the Orphan Drug Tax Credit (ODTC). For those living with rare diseases, like sickle cell disease (SCD), the ODTC is necessary for developing new therapies. 

Drugs receive orphan drug designation and the ODTC when they are intended to treat rare diseases, like SCD. A repeal of the ODTC would result in 33 percent fewer orphan drugs coming to market. Currently, there are multiple drugs in development to treat SCD that receive orphan drug designation. That means a repeal of the ODTC could decrease the development of these life-improving, and sometimes life-saving, therapies.  
Contact your representative and share your story about why drug development is important to you. You can use NORD's site to find and contact your representative. 

For more information about the impact of the Orphan Drug Tax Credits on treatments for rare diseases, check out NORD's white paper.  

Spotlight Story: Meet Michelle

Michelle is a 27-year-old sickle cell warrior. She shared with us her journey with SCD and various ways that she overcomes her complications, including yoga!
Michelle: [I'm] 27 [with] sickle cell plus beta thalassemia. I'm in school for yoga teaching and dance. 

Sick Cells: What type of work do you do? 

Michelle: I do a lot of volunteer work. I'm on disability, so any of the jobs I do are temporary, and like I said, these are volunteer jobs. 

Sick Cells: When you were working, has your sickle cell impacted your job? 

Michelle: Yes. That's why I'm on disability. I've been working since I was 17 years old. Had my first major crisis when I was 18. I was basically sick on and off at least twelve times a year. I had a stroke when I was 20, more than a dozen deep vein thrombosis (DVTs) and pulmonary embolisms. I've also had a blood clot in my heart that was actually discovered while I was at work because I passed out at my desk. 
Sick Cells: How do you manage your sickle cell on a daily basis?

Michelle: On a daily basis? Hydration is key. Drinking water. Even if I can't get out of bed, I keep bottles of water in the bed or close to me. The breathing exercises, meditation, and yoga. Also, a ton of medication, including hydroxyurea and pain medication. 

Sick Cells: How is yoga? Is that helping you?

Michelle: Definitely. It helps with the breathing, kind of for pain management as well as understanding my body and its limits. Gaining more awareness of my body as well as helping with blood circulation.

Sick Cells: What gives you hope?

Michelle: My doctors and the care that I'm beginning to receive. He understands me and treats me like a human being.  

News You Can Use

New Online Platform, oneSCDvoice, Aims to Empower and Unite Sickle Cell Disease Community: The full platform is slated to launch in December, but click here to pre-register for full updates.

Increasing Hydroxyurea Dose Helps to Keep Young Sickle Cell Patients Out of the Hospital: St. Jude Children's Research Hospital's new study appeared in the American Journal of Hematology this month.

Global Blood Therapeutics CEO, Ted Love, Came Back for One More Job: Why he left retirement to take on the role as President and CEO of Global Blood Therapeutics (VIDEO).

Epidemiology Forecast: What epidemiologist predict for sickle cell disease up to 2025
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