Forum Discussions - Sikcell: People living with Sickle Cell2024-03-28T12:15:47Zhttps://sikcell.com/forum?feed=yes&xn_auth=noAnyone use these products?tag:sikcell.com,2022-04-29:2131823:Topic:936812022-04-29T23:42:23.433Zmike smithhttps://sikcell.com/profile/mikesmith
<p><a href="https://healingblendsglobal.com/collections/sickle-cell">https://healingblendsglobal.com/collections/sickle-cell</a></p>
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<p>Is it good for those with beta thallesmia minor? I gotta fight to move, I tire down very easily...</p>
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<p><a href="https://healingblendsglobal.com/collections/sickle-cell">https://healingblendsglobal.com/collections/sickle-cell</a></p>
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<p>Is it good for those with beta thallesmia minor? I gotta fight to move, I tire down very easily...</p>
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<p></p> The Hibiscus Studytag:sikcell.com,2021-06-15:2131823:Topic:907142021-06-15T14:00:20.135ZRachel Geigerhttps://sikcell.com/profile/RachelGeiger
<p><span>The Hibiscus Study™ is inviting adults and adolescents 12 to 65 years old with a clinical diagnosis of sickle cell disease (SCD) to take part in a clinical research study. The primary purpose of the Hibiscus Study is to evaluate the safety and effectiveness of an oral investigational medication to improve anemia and decrease annual pain crises in people with SCD. To learn more about study participation, and to see if you or your adolescent child may qualify, sign up at…</span></p>
<p><span>The Hibiscus Study™ is inviting adults and adolescents 12 to 65 years old with a clinical diagnosis of sickle cell disease (SCD) to take part in a clinical research study. The primary purpose of the Hibiscus Study is to evaluate the safety and effectiveness of an oral investigational medication to improve anemia and decrease annual pain crises in people with SCD. To learn more about study participation, and to see if you or your adolescent child may qualify, sign up at</span> <span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fsicklecellstudy.com%2F%3Ffbclid%3DIwAR0HhV9WIi_8lJjG9KO64FKZgpgAcIFXBUDDNY_KLDqSlo8SjLISFNsR01U&h=AT1-AEoIWVlAwJZ5fXr44Rz6-A6EXBH-XpM00tzCVJM-V06pshuCHg2VTr8KUhk8MoQcwvua6B4XiwrDo2ULpm7iJld9c-l9M7bblfcXRJxOXGcn7zwzzhMR97mNWXTHKA&__tn__=-UK-R&c[0]=AT21ZwtUsjP1leaOQ2Tu0lbdni1JzU2VeY7NSWesLQSgUMFPA_jQVo5QtWu5_UTdWNz5dbP6K6hARydew-0iuFVcLKSsPMNv_-bOpYkHLyJe563Hfkr1EQz2CLp0mRC8QmQqLfGvRP2bg3f8F_o-7_s3ZlQHrKwEwPqgxI5Rop4jhD7c0ZIlSzFP-li0Sgea80I__G4" rel="nofollow noopener" target="_blank">sicklecellstudy.com</a></span></p>
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<p>Must live in Miami, Florida area.<a href="https://storage.ning.com/topology/rest/1.0/file/get/9094063865?profile=original" target="_blank" rel="noopener"><img src="https://storage.ning.com/topology/rest/1.0/file/get/9094063865?profile=RESIZE_710x" class="align-full"/></a></p> Sickle Cell Trials for South Florida residentstag:sikcell.com,2021-05-20:2131823:Topic:907652021-05-20T16:29:09.513ZRachel Geigerhttps://sikcell.com/profile/RachelGeiger
<p>Hi my name is Rachel</p>
<p>I work for a research facility in Miami, Florida. We are very passionate in helping fight the battle against SCD. The current trials are as follows:</p>
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<li>Duration: 14 weeks Inclusion: Ages 12 to 17 inclusive, and adults over 18, Compensation: $125 per visit and $20 Phone Call. Total $ 955, Medication: Food Study</li>
<li>Duration: 21 days with extensions option of 12 weeks, Compensation: 21 Days (8 visits) – $1,050.00, Extension available with $100.00 per…</li>
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<p>Hi my name is Rachel</p>
<p>I work for a research facility in Miami, Florida. We are very passionate in helping fight the battle against SCD. The current trials are as follows:</p>
<ol>
<li>Duration: 14 weeks Inclusion: Ages 12 to 17 inclusive, and adults over 18, Compensation: $125 per visit and $20 Phone Call. Total $ 955, Medication: Food Study</li>
<li>Duration: 21 days with extensions option of 12 weeks, Compensation: 21 Days (8 visits) – $1,050.00, Extension available with $100.00 per regular visit and $200.00 for dosing days, Total – $1,450.00, Medication: Multiple Dose Study</li>
<li>Duration: 52weeks Inclusion: Ages 12 to 65, Compensation: 1,800.00 and Extension 900.00, Medication: Oral Meds</li>
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<p>If you would like to find out if you qualify, sign up at <a href="https://sicklecellresearch.com">https://sicklecellresearch.com</a></p>
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<p>Transportation is offered for those who need it.</p>
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<p>God bless!</p> Sickle Cell Patients and COVID-19 Vaccine Adverse Reactions?tag:sikcell.com,2021-04-19:2131823:Topic:904972021-04-19T03:29:57.952ZClaude L. Johnson Jr.https://sikcell.com/profile/ClaudeLJohnsonJr
<p>Let me preface this post by saying that first, I am specifically interested in hearing the *bad* stories about Sickle Cell patient responses to the COVID-19 vaccines. Second, I'm mostly interested in hearing about adverse reactions to the mRNA vaccines, e.g. Pfizer/Bio-N-Tech's and Moderna's vaccines. Hearing about adverse reactions to the AstraZeneca or J&J vaccine are fine but my focus, and what I intend to receive, are 1 of the 2 mRNA vaccines.</p>
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<p>That said, I want to hear…</p>
<p>Let me preface this post by saying that first, I am specifically interested in hearing the *bad* stories about Sickle Cell patient responses to the COVID-19 vaccines. Second, I'm mostly interested in hearing about adverse reactions to the mRNA vaccines, e.g. Pfizer/Bio-N-Tech's and Moderna's vaccines. Hearing about adverse reactions to the AstraZeneca or J&J vaccine are fine but my focus, and what I intend to receive, are 1 of the 2 mRNA vaccines.</p>
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<p>That said, I want to hear about particular instances of adverse reactions among Sickle Cell patients to either of the mRNA vaccines. How many in this community have had either vaccine? How many have suffered an adverse reaction up to and including fatality, either anecdotally or documented?</p>
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<p>I hope to get vaccinated within the next month especially since I have a trip to Jamaica coming up. I'd like to know what research, if any, has been done into the chances of adverse reactions within the Sickle Cell community specifically. We are our own special group with our own special characteristics so I want to see more focus about how we respond.</p>
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<p>Anecdotally, I've heard from physicians at Howard University's Sickle Cell Clinic and UCSF Benioff Children's Hospital Oakland's Adult Sickle Cell Clinic that there have been no adverse reactions among their patients. Unfortunately, I've only heard anecdotal stories about 10 - 20 patients max. That's hardly a statistically significant sample size.</p>
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<p>I need to check in again with my former physician in Oakland but someone, somewhere, has to have ground truth. Hopefully that's within the community here. </p>
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<p>Cheers!</p>
<p></p> FDA approves crizanlizumab-tmca for sickle cell diseasetag:sikcell.com,2019-11-18:2131823:Topic:743712019-11-18T20:20:47.736ZAde Dotunhttps://sikcell.com/profile/ade
<p>On November 15, 2019, Food and Drug Administration approved crizanlizumab-tmca (ADAKVEO, Novartis) to reduce the frequency of vaso-occlusive crises (VOCs) in adults and pediatric patients aged 16 years and older with sickle cell disease.</p>
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<p>Read the full press release from the FDA here:…</p>
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<p>On November 15, 2019, Food and Drug Administration approved crizanlizumab-tmca (ADAKVEO, Novartis) to reduce the frequency of vaso-occlusive crises (VOCs) in adults and pediatric patients aged 16 years and older with sickle cell disease.</p>
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<p>Read the full press release from the FDA here:</p>
<p><a href="https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-crizanlizumab-tmca-sickle-cell-disease">https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-crizanlizumab-tmca-sickle-cell-disease</a></p> World Sickle Cell Daytag:sikcell.com,2019-06-19:2131823:Topic:736822019-06-19T22:13:16.273ZJuliehttps://sikcell.com/profile/Julie174
<p>The National Institutes of Health, the National, Heart, Lung, and Blood Institute (NHLBI) in the US says they're on track for a cure within the next 5-10 years<br/> Here's the article: <br/><a href="https://www.hhs.gov/blog/2019/06/19/coming-together-to-confront-sickle-cell-disease.html">https://www.hhs.gov/blog/2019/06/19/coming-together-to-confront-sickle-cell-disease.html</a></p>
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<p>Guys how do you feel about this?</p>
<p>The National Institutes of Health, the National, Heart, Lung, and Blood Institute (NHLBI) in the US says they're on track for a cure within the next 5-10 years<br/> Here's the article: <br/><a href="https://www.hhs.gov/blog/2019/06/19/coming-together-to-confront-sickle-cell-disease.html">https://www.hhs.gov/blog/2019/06/19/coming-together-to-confront-sickle-cell-disease.html</a></p>
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<p>Guys how do you feel about this?</p> Cannabis for alternative medicinestag:sikcell.com,2019-01-24:2131823:Topic:724662019-01-24T10:10:31.044ZDaniel Lennoxhttps://sikcell.com/profile/DanielLennox
<p>Have you ever tried to used cannabis for medical purposes? Sickle cell anaemia can cause a multitude of symptoms to manifest, one of which is pain. The pain is caused by the shape of the cells and how this can cause blockages within blood vessels in the chest, abdomen, and joints. I have read many articles about medical cannabis and how it can help you in terms of chronic pain, bone injuries, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot…</p>
<p>Have you ever tried to used cannabis for medical purposes? Sickle cell anaemia can cause a multitude of symptoms to manifest, one of which is pain. The pain is caused by the shape of the cells and how this can cause blockages within blood vessels in the chest, abdomen, and joints. I have read many articles about medical cannabis and how it can help you in terms of chronic pain, bone injuries, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article</p>
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<p><span><a class="in-cell-link" href="https://www.ilovegrowingmarijuana.com/sfv-og/" target="_blank" rel="noopener">https://www.ilovegrowingmarijuana.com/sfv-og/</a></span>. Cbd and thc are also new to me and I don’t even smoke. Alternatively, they’ve also found new ways to infuse cannabis on food and beverages. If this is true I can’t find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks</p> Sickle cell Trait or Disease?tag:sikcell.com,2018-11-01:2131823:Topic:714872018-11-01T14:03:41.268Zmayree egoorhttps://sikcell.com/profile/mayreeegoor
<p> I just wanted to know how many here are actually suffering from sickle cell symptoms because of their trait though they are not with SCD because I was been a carrier ever since I heard anything abt SCD and its trait and i was been suffering with its symptoms like fatigue, chest discomfort, joint pains, pain crisis, vit D and B12 deficiencies .... is there any one like me here ?</p>
<p> I just wanted to know how many here are actually suffering from sickle cell symptoms because of their trait though they are not with SCD because I was been a carrier ever since I heard anything abt SCD and its trait and i was been suffering with its symptoms like fatigue, chest discomfort, joint pains, pain crisis, vit D and B12 deficiencies .... is there any one like me here ?</p> Hospital Stay Bagtag:sikcell.com,2018-01-13:2131823:Topic:693672018-01-13T04:39:17.139ZJuliehttps://sikcell.com/profile/Julie174
<p>Hi guys! What are your tips and tricks for packing a hospital stay bag that makes you more comfortable? If you can, also include a short checklist of what you usually take with you when you have to be admitted. Because of a recent change in health, I've decided to pre-pack a little bag in case of emergencies that a family member can grab for me in the event that I need to be admitted.</p>
<p>Hi guys! What are your tips and tricks for packing a hospital stay bag that makes you more comfortable? If you can, also include a short checklist of what you usually take with you when you have to be admitted. Because of a recent change in health, I've decided to pre-pack a little bag in case of emergencies that a family member can grab for me in the event that I need to be admitted.</p> Sickle Cell Travel Hackstag:sikcell.com,2017-09-08:2131823:Topic:674672017-09-08T17:24:31.969ZBukky Adehttps://sikcell.com/profile/BukkyAde
<p>I traveled recently and found myself in a bit of pain from the cold on the plane (I should have known better and brought a blanket or hoodie) I eventually got a blanket and took some medicine and was fine but that got me thinking, what are must do things before/ during and after a flight or any length?</p>
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<p>I always get up and walk around about half way through for short flights and every 2 hours for flights more than 4 hours (and now I know to ALWAYS bring a blanket). What are you…</p>
<p>I traveled recently and found myself in a bit of pain from the cold on the plane (I should have known better and brought a blanket or hoodie) I eventually got a blanket and took some medicine and was fine but that got me thinking, what are must do things before/ during and after a flight or any length?</p>
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<p>I always get up and walk around about half way through for short flights and every 2 hours for flights more than 4 hours (and now I know to ALWAYS bring a blanket). What are you travel rituals?</p>