~SCDAI News You Can Use~
April 2021
Let's Spring Into Action!
Please be sure to continue to scroll down
(we have a lot of good information to share with you :)!
Covid-19 Vaccination Information!

Have you received the Covid-19 vaccine (only for individuals with SCD)? If yes please click below: If you have already completed please disregard.


Are you interested in the vaccine but have not been vaccinated(only for individuals with SCD)? Please Click Below:If you have already completed please disregard!

Here is some of the Covid 19 Vaccination feedback we have received thus far from Individuals with SCD! We will keep you updated as we receive more responses from the above surveys: (If you have not completed one of the surveys please do!)

Responses from individuals with SCD that were fully vaccinated:

·      Each time I received the shot I was met with minimal cold like symptoms afterwards. One thing I did experience was a lot of fatigue and some body pain for a while, but it began to ease as the weeks went by. All in all, I'm glad I decided to get the vaccine!

·     After the first dose I was fine no side effects at all. The second dose I had a lot of the side effects (headache, chills, and nausea).

·     My arm was very sore.

·      Overall good experience. Only experienced mild muscle pain at the injection site but it subsided in 24 hours.

·      Some side effects experienced the day after the vaccine lasting 3 days. Side effects I experienced was exhaustion the 1st day after the vaccine. Some diarrhea the second day with general tiredness the second and third days. A little tenderness at the injection site the day after the vaccine. Overall not bad at all. Plan time for rest.

·     No problems with both of the injections

·      My arm was a little sore for the first shot and when I got the second one I had like a 24hr bug but the next day I was ok

·     1st dose: Fatigue 2nd dose: No noticeable side effects

Responses from individuals with SCD that received first dose and are awaiting the second dose:

·      I have only taken the dose so far. I just had sore arms and felt dizzy for a little bit. But after taking Tylenol I felt fine. My 2nd dose is in 3 weeks

·     My first shot was typical as any other vaccination shot that I have received that left my arm sore for a few days and I will receive my second shot on Easter.

·     I was nervous about getting the shot but I did it and the area was tender the day/night. It is fine now. Awaiting #2 soon.


*Disclaimer this information is not intended to be medical advice but are real experiences from individuals with Sickle Cell Disease (SCD) for your informational purposes only. Remember it is your decision and please always be sure to consult with your medical provider for medical advice.
Per the Centers for Disease Control (CDC) COVID-19 vaccines are recommended for individuals with sickle cell disease, their families, caretakers, CHWs and providers. By educating yourself and those close to you about the vaccine, you can help increase public knowledge and health. The CDC has created toolkits to help you answer common questions and educate others about the COVID-19 vaccination.
To download a sickle cell-specific toolkit, Click: CDC toolkit
Upcoming Events/Programs
Monthly Statewide Support Group Meeting!
The National Sickle Cell Disease Association of America, Inc. (SCDAA) will host its 2021 Annual Advocacy Day event on April 20-21 from 4-5 p.m. EST.

Join and learn how to #BeASickleCellAdvocate!

In response to COVID-19, Advocacy Day will be held virtually this year.

CLICK BELOW TO REGISTER:
*FREE Webinar hosted by The Sickle Cell Disease Association of America:
Is the COVID-19 vaccine safe for sickle cell patients? Find out about the importance of getting vaccinated in Vax Facts, a straight forward webinar about sickle cell & the COVID vaccines; hosted by top sickle cell physician Dr. Ahmar Zaidi.
Vax Facts
April 21st, 2021
5:30 PM CST/6:30 PM EST
Registration is required to participate
Northstar Reach spring and summer virtual camp schedules are as follows:


Spring Camp-At-Home Schedule
April 30-May 1: General Session
May 21-22: General Session

Summer Camp-At-Home Schedule
June 15-18: Transplant (Camp Michitanki) Camp
June 22-25: Solstice Camp
June 29-July 2: Cardiology Camp
July 13-16: Epilepsy (Camp Discovery) Camp
July 20-23: Sickle Cell Camp
July 27-30: Sibling Camp

The registration link for spring camp is:

Summer camp registration will open in late April. We will be sure to share that link and information as well.
Summer Camp
Announcement!:
We are proud to announce a collaboration with our Sister organization Sick Cells who partners with Dimagi and 5 other sickle cell orgs to pilot "Community Hub," a prototype COVID-19 vaccine community education tool specifically for the SCD community.

As vaccines bring new hope to the end of the pandemic, underserved communities are in need of immediate resources to address disparities in vaccine rollout rates & availability. The Community Hub will be used by SCD CBOs, nonprofits, community health workers (CHWs) and other healthcare providers as they work with patient networks and clients to address concerns surrounding the COVID-19 vaccines, answer questions, and provide educational resources to their communities.

Read the full press release at https://sickcells.org/covid-19/ 

Thank you to Sickle Cell Disease Association of Illinois (SCDAI), Sickle Cell Thalassemia Patients Network (SCTPN), Supporters of Families with Sickle Cell Disease , and Sickle Cell Disease Association of America - Philadelphia/Delaware Valley Chapter & Axis Advocacy for joining us on this important venture! Extra thank you to Dimagi for building this prototype pro-bono. We can't wait to continue working with you all on this!
Be The Match offers Sickle Cell Disease Counseling
~Free Counseling for patients with Sickle Cell Disease (SCD)~

COVID-19 has further complicated everyday life for patients with sickle cell disease. To help, Be The Match is now offering counseling services to patients with sickle cell disease and their loved ones regardless of their treatment status. One of their licensed social workers can provide you with one-on-one support for personal and emotional issues.
Calling All Individuals with Sickle Cell Disease and Their Caregivers!
You are not alone! Please join one of our many amazing support systems below from the comfort of your cell phone!
YOU DON'T WANT TO MISS OUT!

  • Did you know there is a Group me (mobile app) for adults with SCD in Illinois? If you are 18 & over with Sickle cell disease in Illinois and want to add yourself click this link . You can also download the app to your phone for convenience.

  • Did you know there is a Group me (mobile app) for Caregiver(s) (parent of individuals with SCD)? If this is you then click this link to add yourself. You can also download the groupme app to your phone for convenience.
YOUR ACTION/VOICE (Advocacy) IS NEEDED!
  • Federal Level Policy/Advocacy:

Fund Sickle Cell Movement!
Sick Cells has started a collaborative movement to #FundSickleCell with Sickle Cell 101 to mobilize SCD patients and advocates across the country to help appropriate funds for federal level policy/advocacy.
Sickle Cell Disease and Other Heritable Blood Disorder Treatment Act (S2465).

  • LocaL LeveL Policy/Advocacy:
Don't forget to keep the momentum and conversations going with your Illinois state representatives, elected officials, mayors and senators.

We need YOUR VOICE and help in ensuring that your Illinois State Senator & representatives know what legislation for Sickle Cell Disease would mean to you and your loved one with Sickle Cell Disease!

What do we need you to do? Call, email or meet with your state senator, and other elected officials and let them know your personal story and why the current Illinois Healthcare Reform House Bill HB158 which includes the Sickle Cell Prevention, Care, and Treatment Program Act is important and needs appropriations of funding!

Click the link below and type in your home address to find your elected officials.
Click here to see the Status of the Bill !
Sickle Cell Studies/Research & Survey
Opportunities Below!

We Need you Input! Decisions need to involve direct input from our Sickle Cell Community (patients & caregivers)! Please participate so your voice can be heard! Read and click below to complete or participate in a study or interview!
The community thanks you in Advance!!! See two opportunities below.


Survey opportunity 1
Survey Goal?
The goal of this survey is to examine what it means to be an individual with sickle cell disease that is “unaffiliated” or “disconnected” from sickle cell disease care. The survey seeks to answer the following questions:
     1. What barriers do individuals with sickle cell disease face when trying to access care?
    2. What keeps individuals with sickle cell disease from trying to access care?
    3. What are effective methods to bring unaffiliated individuals with sickle cell disease into care?
The data collected from the survey will provide useful information for the design of interventions to bring more people with sickle cell disease to evidence-based care.
 
Survey Participants? 18 & Over
 
Survey participants must be over the age of 18. We would like to especially reach adults with sickle cell disease who are currently or has been in the past unaffiliated from care. This means they do not currently receive care from a sickle cell disease specialist or did not receive care from a sickle cell disease specialist for more than a year at any point in their lives.
 
Note that we are looking for adults with sickle cell disease that meet the above criteria in the United States.
Survey opportunity 2
Survey Opportunity 3

When you sign up be sure to tell them that the Sickle Cell Disease Association of Illinois referred you! We will also receive a gift card that will be used as giveaways to patients & families at various programs/events :) Thank you in advance!
SCD Resources/Information
You need to Know! Are You Connected?

1.Do you know about the OneSCDVoice.com community?
Click here to view and join the online community!

2.Do you receive Sick Cells Newsletters? If no, Click Here to view and join!

3.Did you know that SCDAI is one of the many member organizations across the U.S of the Sickle Cell Disease Association of America (SCDAA)? Click Here to learn more about the SCDAA.

4.We have 4 Food & Drug Administration (FDA) Approved Sickle Cell Treatment therapy options? If you would like a brochure for any of the therapies below let us know!

Please click on the drug therapy names below to learn more about each of them! Please use this information to inquire at your next doctor's appointment about these options for yourself or for your loved one(s) with Sickle Cell Disease in your life!
We also have printed information at our office if you would like to have the information in hand when talking to your provider(s).




(Here's a video below from one of our partner organization (Sickle Cell Disease Association of America-Michigan Chapter) about Hydroxyurea.
Partnership Opportunities with SCDAI!
Community Involvement
The Sickle Cell Disease Association of Illinois is looking partner with multiple community organizations/groups that can & would be interested in joining our Monthly Statewide Virtual Support Group Meetings via Zoom! 

Time: 6:00PM-8:00PM CST. 
Dates: The 3rd Thursday of the month

Please let us know if you and or your organization would be interested in securing a date & partnering with us. We can learn more about your organization/group & your organization can learn more about the issues & current state of Sickle Cell Disease & Sickle Cell Trait in Illinois. Thank you in advance!  
IN LOVING MEMORY

Please join us by sending up a special prayer and love to the families of our Beloved, Fallen Sickle Cell Advocates/Warriors! :

Nurse "Pat" Patricia Ann Bailey 1947-2020

Sirchester Wiley Jackson 1979-2020

Sheila Price 1955-2020

Marqus Valentine 1983-2020

Lafayette Jay Thomas 1969-2020

Reginald White 1971-2020

George Gaddy 1965-2020

Elijah Powell 1995-2020

Annette Delgado 1968-2019

Aaron Morris 1959-2019

Ronicia Otey 1990-2019

LaTisha Stallings 1980-2019

Please contact us and let us know if you have a loved one who had Sickle Cell Disease & has gained their wings! We are creating a page online (via our website) and a in person Wall of Fame tribute at our office! We want to pay respect and continue to show love to our amazing advocates and fighters who are no longer with us!
SCDAI Brochure
Call or Email us if you would like us to mail you a few copies.
Sickle Cell Disease Association of Illinois | 773-526-5016 | E-mail | Website