Wow! There is so much I could write about, but in the interest of time, I have decided to share with you my top 5 most memorable moments while attending the 2015 Sickle Cell Forum at the National Institute of Health (NIH).
Listening to doctors and researchers share the most up-to-date information about Sickle Cell Disease is priceless. What’s even more fascinating and intriguing is there were many passionate clinicians and patients in one space talking about the future of sickle cell. If you have ever needed to feel hope, this week at the NIH hope prevailed!
1 Listening to Wisdom
The moment that touched me most as a parent was seeing Sickle Cell patients in the room who were over the age of 60 years old and were still living and mobile. While 60 may seem young to some, when you think of someone who has lived with Sickle Cell for over 6 decades, it is admirable that they are still fighting and living. In fact, these sickle cell warriors shared their ages with pride, there was no shame in expressing that you are a seasoned citizen. The audience also applauded when these Sickle Cell patients shared their ages.
“Over last decades, life expectancy for #sicklecell patients increased to 40-60 yrs of age, thanks to NIH-supported research.” – Dr. Gibbons
— NIH NHLBI (@nih_nhlbi) June 25, 2015
During day 1 of the conference a 69-year-old man living with Sickle Cell who is a self-advocate and full of words of wisdom shared how he helps redirect his treatment into a more positive experience. He told us to:
“Keep a copy of your Medical History on you at all times ~ Ex. What type of medicines you take/how often, dosage, normal hemoglobin, etc. Signed by your Dr. ~ Looks Like You Have Your Act Together ”
I caught up with him on day 2 and asked if he could share with me how he has managed to live so well with sickle cell. He said, over the course of his life he has learned that the main things everyone needs to do in order to stay healthy, a person with sickle cell needs to abide by those rules even more. We know that those general health rules are: eating a healthy diet, getting enough rest, exercising, fresh air and sunlight, drinking plenty of water, etc. He also shared that he believes from personal experience that “Right after you have a crisis you need to rest and give your body time to heal” He words were simple, yet practical. He also shared that one year he had 13 crisis and from that experience he learned that you can’t go back to doing what you were doing before the crisis; instead, take it easy and give your body time.
2 Cutting Edge
Honestly, when I first heard about the Sickle Cell Forum at the NIH, I didn’t know what to expect. The most valuable part of the forum is that passionate people (patients, parents, caregivers, doctors, healthcare providers etc) are in a room, learning, participating and sharing together. This means that the room is full of different perspectives and you can learn from first-hand experiences, creative thinkers, and even make suggestions or learn more about what resources are available. Basically, everyone is together learning from each other and that experience is invaluable. The community seemed close-knit and useful, I loved that beneficial information poured into each room. If you ever have an opportunity to attend something similar, I urge you to do so.
Community Based Support on the Horizon
One of the new ideas mentioned that really stood out to me was from Dr. Lewis Hsu’s presentation. He discussed implementing Community Health Workers and Patient Navigators to help provide social and cultural alignment when intervention is needed. To me, one of the greatest needs in the sickle cell community is comprehensive care in and out-patient. There are so many factors which go into treating a patient other than basic symptoms and diagnosis. I believe, having trust worthy community health workers to help patients make better educated decisions for their own care is long overdue. Community Health Workers receive general specialized training; while, Patient Navigators would have more medical knowledge and training that they can share with patients.
Why is their a need for a sickle cell community health worker? Dr Lewis Hsu #SCDForum15 @nih_nhlbi A photo posted by Sickle Cell Disease Assn Of IL (@scdai) on
In addition, I love that the conference addressed the issue of care affecting older adults who are living with sickle cell. There is a disparity, where a lot of efforts are provided during the pediatric years and less new innovative medical breakthroughs are given to adults. The good news is we are aware of the disparity and changes are being implemented.
3 Advancements are Being Made
The medical community is making strides in healthcare related to sickle cell disease. Sickle cell patients are now reaching new milestones, while we are tremendously grateful of the strides being made and the new research now available to us, we still have a long way to go.
— Sickle Cell 101 (@sicklecell101) June 26, 2015
Chronic Pain is real
Older adults with sickle cell need different care than the pediatric community. Chronic pain often occurs and there is a push to help provide specialized care and understand patients who live with long-term pain. There is also a new instrument that may be available soon which will provide a person’s pain levels using facial recognition, how amazing right!
Pain! 2 stay or 2 go? (Home vs hospital) Dr. Wally Smith Virginia Commonwealth University #SCDforum15 @nih_nhlbi A photo posted by Sickle Cell Disease Assn Of IL (@scdai) on
4 We Still Need Larger Voices
During on the sessions, that there are still people who don’t know what it means to have sickle cell trait or even know whether they carry the trait is alarming. The overwhelming elephant in the room for me, is how can we create larger more defined PSAs; especially on HBCU college campus’ that promote knowing your status. Nope, I’m not talking about HIV, you need to know that too, I’m talking about whether you carry the Sickle Cell trait. Basically, I am a firm believer that the care for future generations in our community is to educate them about the trait, it’s one of the top preventive measures. Shout it out!!! KNOW YOUR TRAIT STATUS, and then educate people about the implications and results that follow from genetic disorders. Next, teach the youth how to support, advocate, and create a better life for those with sickle cell. The message starts with us, but must be reinforced throughout our communities.
Why is awareness important? Ignorance is rampant Trait status Pediatric vs adult experience #SCDForum15
— HealthandFitness4You (@HandF4You) June 25, 2015
5 Don’t Be Afraid of Clinical Trails
While a bone marrow transplant is a cure, finding the perfect match can be a huge challenge if there is not a sibling who is an exact match. Also, if you or your child doesn’t have an opportunity to be cured via a bone marrow transplant, fear shouldn’t deter you from taking part in other possibilities that may exist such as taking part in a clinical trail. In fact, clinical trails are necessary for doctors to find better medicines to treat or cure patients. In one session Dr. J.J. Strouse discussed that clinical trails may sometimes be the standard of care; especially when treating oncology patients so patients who accept clinical trials may be able to receive advanced care. While, patients who do not accept clinical trails may only receive the basic care that is available. When discussing sickle cell, Hydroxyrea working wonders for many patients and it is because of Hydroxyrea clinical trials that many sickle cell patients experience fewer pain crisis and are having a better quality of life.
5 Partner with your Healthcare Providers
Do you want to see your health improve? Do you want to see your treatment improve? Do you want to have a better quality of life? If so, partner with your healthcare provider, this is true regardless of your diagnosis or healthcare needs. Become your own team advocate. Healthcare providers need to hear from us about how they can better care for us, be verbal and be receptive. Develop a network of trust with your provider and seek knowledge about your healthcare needs. The way you look and interact with others does matter. This forum was a huge networking event of people who are leaders in the community and are advocating for sickle cell. The NIH’s forum was a great way to connect with others who have shared passions. One of my takeaways is that Globally, we need to make many more strides in educating people about sickle cell, but we have done better to raise awareness across the world.
Reader Response: Did you attend the 2015 Sickle Cell Forum at the NIH in-person or via the webcast? If so share some of the lessons or information that stood out to you the most.
If you were unable to attend what are some questions that you have about sickle cell and the latest research available?
Would you like to view the recorded webcast? Here’s the 2015 SCD Forum Link
Reader participation: If you would like to share your 5 favorite moments, contact me so I can share it with others here on CleverlyChanging.com.
Check out the hashtag #SCDforum15 to learn more.
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