Interview with a Medical Doctor with Sickle Cell Disease

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I have decided to do a spotlight series on the careers possible for those with sickle cell. If you would like to be featured, please follow the instructions HERE.  You all know that I am a nurse, but I would like to seize this opportunity to introduce you to the one and only, amazing, and inspiring, Dr. Y, who has graciously done this interview.

SCW: Dr. Y, it’s a pleasure to meet you. Let’s start from the beginning, how old were you when you found out you had sickle cell?
I was 4 yrs old. The doctors initially thought I had appendicitis.

SCW: I guess we all find this out at a young age. Your parents instilled in you that you can do anything you set your heart and mind to. Has this always been true?

Pretty much. My parents raised me just like my siblings without sickle cell disease. Growing up in Nigeria, I used to be out of school for ~ 6 months out of the year. Yes, I has SSD but no excuses allowed. School was important and I was expected to catch up with my classmates. When I wasn’t sick I had to do everything everyone else did: cleaned the house, washed clothes, cooked, fetched water. Sounds easy right, but it actually wasn’t. Cleaning the house involved scrubbing the walls and floors, washing clothes was done by hand, no washer and dryer. Cooking involved grinding red hot peppers by hand, using grinding stones, my hands would sting for hours, because I was pretty bad at it. Fetching water, sometimes involved waking up at ‘ole dark thirty’, as in the crack before the crack of dawn, walking for ~ an hour or more each way, sometimes waiting for ~ two or three hours in long lines. Walking back home with a bucket full of water on my head, all before breakfast. All these things were my parents teaching me discipline.

SCW: Wow, that’s really hardcore. My parents pretty much spoiled me rotten ;p. I had to do chores, but it was usually significantly less laborious than what my non-SSD siblings did. Moving along, what made you decide to become a doctor?

I have always liked science, and was the geeky kid who would rather read the encyclopedia, than socialize. Don’t get me wrong, I’m not antisocial! The human body intrigued me, plus I was always fascinated by people who were different; It was always easy for me to make friends with the ‘outsiders’ ‘cos I felt like one.

SCW: What area of medicine do you practice in?
I am an Obstetrician/Gynecologist

SCW:  The life of a medical practitioner can be quite taxing, for our readers, could you describe a typical day?
Dr. MD: My typical work day starts at 8 am. I work 24 hour shifts covering several different areas. Clinic-seeing patients in the office. Labor and delivery- laboring patients, including performing cesarean sections. I also cover Triage (the emergency room), which may include anything from treating pregnant women with colds, to performing emergency surgery on a patient with an ectopic pregnancy (pregnancy in the tube). Consults from inpatients and patient transfers from other hospitals also keep me pretty busy. My job involves being a compassionate, caring physician, being diplomatic, multitasking and fielding problems. It is highly stressful and requires a great deal of concentration. Honestly, I am not always the aforementioned descriptive, especially when achy, or exhausted. Patience, is not my strongest suit, I’m working on it!
I try to stay hydrated when working, eat healthy and take a ten or twenty minute power nap when I can. Sometimes I’m running for 24hrs straight ‘cos so much is going on.

SCW: Amazing! You work for 24 hours non-stop? Unreal! Medical school presents a challenge to a sickle cell warrior. I know many of our compatriots have punked out of applying or going to medical school because of this challenge. How were you able to cope with medical school and sickle cell disease?
Dr. MD: Medical school classes started at 7.30am till about 6pm Monday through Friday. I was in the ER several times and had a few hospitalizations. I figured out I wasn’t cut out to be a Pediatrician ‘cos I would always catch whatever they had. My friends were pretty cool with my SSD, and would help me catch up with school work. The Residents and Attending physicians were also pretty nice and would make sure I was well taken care of.

Residency was different, I was now a real physician working 24-40 hr days. Not all colleagues were sympathetic to working extra hours to cover a sick doc. My friends came through by starting IVs in the call room or in my apartment when it wasn’t too busy, or I was off. The nurses and anesthesiologists would give me pain meds sometimes, because I did not have a regular physician. Probably all illegal but hey they got me through.

SCW: It’s fortunate that your classmates and colleagues were so supportive. I got the same support during nursing school. I think once you explain to people what you are dealing with, they ‘get’ it and help you work around sickle cell. Next question, how do you manage SCD and still maintain a thriving career?
I’ll say it’s very challenging! Between work, port flushes and doctors appointments I feel like I have 2 full time jobs! When I come home from work in the morning, everything hurts. I usually would take Oxycodone + a muscle relaxant+ a heating pad for my legs and rest during the day if I can. I have a Gastroenterologist and a Hematologist/Oncologist that I see every few months- I keep my appointments, drink plenty of water, try to eat as much unprocessed food as I can, take my medicine, well most of the time, and try to get as much rest as I can. The last one is actually very hard, I’m an insomniac and sleep whenever I can, which is during the day when I’m not working. I work two or three 24 hour shifts a week.

Holy moly! 3-24 hour shifts! Now I can’t complain after a 12-hour shift! You are really committed to your career. Thank you for sharing your regimen; I think we all have some level of insomnia. I wonder, has sickle cell limited any area of your life?
Not really. I’m tired a lot of times because of my work schedule and taking narcotics, so I don’t have a lot of time to socialize. I would like to be in a relationship with someone nice, who understands me and is considerate of my lifestyle. I’m hoping he’s out there!

SCW: I know he’s out there…we just have to find him! When you reach obstacles in your life, what helps you overcome it?
Dr. MD: Nine years ago I was diagnosed with cancer. Prayer, my friends, and family helped me through. My  favorite sayings ‘God never gives you more than you can handle’ and ‘When you are going through hell, keep on going’ also give me the extra strength to keep on pushing.

SCW: Amen to that! The first quote is one of my favorite as well! I think it’s so apt to our situation. I am just going to throw this next question in here, to prove to the skeptics that you are a sickle cell warrior just like they are.  Do you have regular pain (more than 2x/wk)? How do you cope with this when you are working?
YES. I am in pain EVERYDAY!!! My pain usually runs from a 3 to a 5 on a 10 pain scale. I do not and will not take narcotics when working, it’s like driving drunk, so I just deal with it, or take Tramadol close to when I’m about to finish my shift, if it is really bad. Rarely if it is really, super bad; I’ll take Toradol and have an IV started.

SCW: I completely understand what you mean. I take Motrin on the job when I’m in pain, and sometimes I am in more pain than my patients! What medications do you take when you are in pain?
Dr. MD: Oxycodone, Toradol, Tramadol

SCW: What is your daily medication regimen?
Folic acid/2 GI meds for ulcers/Hydroxyurea/Cymbalta/Multivitamins

SCW: I see you are taking Hydroyurea. Personally I am not a fan, but I would like to understand your experience with Hydroxyurea; would you recommend it to someone else? Why or why not?
In 2001, I developed Non-Hodgkins Lymphoma, 6 months after starting Hydroxyurea (Now, I’m in compete remission). I do not know if the Hydroxyurea precipitated it, however my last hospital admission was in 2007. So I take it, because it works for me.

SCW: Thank you for sharing that. Looking at the 14 year old version of yourself what would you tell her if you could…
I would tell my 14 year old self: life gets better 😉

SCW: Hahaha, so true! I would tell my 14 year old self probably the same thing, and to avoid boys XYZ since they are heartbreakers…lol. Is there anything else you would like to tell sickle cell warriors?
To my fellow sickle cell warriors-stay strong and remember God never gives us more than we can handle!

SCW: Thank you Dr. Y for doing this interview. It was an honor and pleasure to meet you. Wow…isn’t she amazing! I told you she was inspiring! This spotlight series is brought to remind you that you can do anything you set your heart and mind to!

56 COMMENTS

  1. Thanks for sharing your experience with me. I am 17 my dream is to become a doctor one day, and i always had doubts but you have inspired me and now i know nothing is beyond my reach its not goin to be easy but i'll make it through just lik you did. Thanks alot!!!

    • Like Dr. Y says, You can do it! It just takes extra motivation, determination and prayers. There is no dream too big Kiara! Good luck!

  2. God is good. I needed to read that to give me that push!! I am a mother with scd and its a job in tself to take care of her but I'm sure God will work out me getting back in school being a great mother and wife one day a career woman too! I praise God everyday because in june it'll make a year I've been hospitalization free because of my faith in the lord!

  3. I'm a nurse. I work in the ER. Just wanted let you know that your blog is amazing. I've learned so much just from reading the home page.

  4. Wow! This is truly inspiring. I wasn’t sure how much longer I could continue to work with SCD, but reading this is a boost I needed to keep going. I have SCD, Crohn’s Disease, and have just had my third surgery to remove a brain tumor. I too am on Oxycodone and do the same things to take care of myself, but I feel sometimes that it is too much, especially on the days that I can’t take my meds because I have to work. Going through this has made me wonder if I can keep putting in full days and extra curriculars as a teacher at a High School. But, I’m no doctor. It’s amazing that a person with SCD can have such a demanding job like that and still remain healthy. God is good!

  5. i have been living with SCD for the past 25 year,i am a university undergraduate and over the years i have been learning new things about the disorder, one just need to learn more about him or herself to prevent crisis. you really tried because becoming a medical doctor is not an easy thing. my dream was to become a medical doctor but i ended up studing Economics due to SCD

    • Joshua, I know that many other sickle cell warriors understand exactly what you just said. But Dr. Y is an admirable person, because she didn’t falter to her dreams, and sickle cell just taught her to be more creative in her management. She really is inspirational. The message is: Never give up.

  6. Thank you for posting this article. I am a medical student, currently entering my second year for the third time. I had to take medical leave two years in a row because of complications from SCD and an autoimmune disorder. I too can definitely relate to doing what you have to do to make it through (self-medicating after an entire weekend of studying plus pulling an all-nighter in preparation for an exam). Even though I may get discouraged at times, I keep going because this has been my dream since I was 8 years old. I desire to work with children dealing with chronic illnesses and hopefully encourage them to keep reaching for the stars in spite of their challenges.

    Thank you Dr. Y for showing others that with a little faith, dedication, and determination, anything is possible. May God continue to bless and keep you!!

  7. hi guys i am so happy reading this comment,i fell uplifted.
    i useto think i was alone with my little brother experiencing this heal on earth but now i see that we are many fighting SD.
    i pray to God to bless all warriors and provide finances whenever thy are in needs. please be posting for us the lastest medicine, and especially if all we can do fund raising to support African children who cant afford the expensive treatment, or school fees and shelter.
    blessing

  8. Dr.Y story is really amazing and I do know myself that all things are possible with God. I am 33 y/o and I am a Registered Nurse. I was diagnosed at 6 months old and basically lived in the hospital up until junior high school. Then things got better for a while, long enough for me to get my RN degree. But since I hit 30 years of age I have been in and out of the hospital so much until I had to let my job go for a while. Not working and using my nursing license that I work so hard for is very discouraging because this is what I have wanted to do ( help others with SCD) since I was a little girl. I really don’t know why my health is declining at this age but I’ll just continue to pray asking GOD FOR HEALING. Please keep me in your prayers also warriors!

    Sherrie

    • @Sherrie, I’m a nurse too, so I definitely understand. I hope you keep getting better. Have you made dietary and lifestyle modifications? That really helped so many warriors that I know; myself included. Feel free to join us on the Facebook page if you haven’t already: http://facebook.com/sicklecellwarrior

  9. Thanks Dr.. i am 13 and i have sickle cell disease, i am very inspired by all you said and i know i will walk in your foot steps. I am from Nigeria also and i want to be a doctor also. thanks for your words of advice

  10. I have sickle cell anemia and have been happily married for 10 years. If you have sickle cell then you can get married if the person you are dating loves God first and in turn will reflect God’s love toward you. 1 Corinthians 13:4-7

  11. Hi, Dr Y., it’s lovely reading this. I, too,am a doctor in Nigeria. I’m 29 and almost through with my internship. I can relate with your story, and equally admire you. I’m at a point where i need to take important decisions regarding my career. And you are inspiring. i love you.

  12. I was browsing through the internet doing some research when i ran across your website. I to suffer from sickle cell anemia and it has not been an easy road but i know that God has a plan for me. I’m in college and trying to start a sickle cell association it’s really hard but im determined to finish. This interview has inspired me so much and I believe that im a sickle cell warrior in the making.

    • @Teara, welcome to the website/group. I know that you can make it and accomplish all your dreams. Check out the SC Warriors facebook page at http://www.facebook.com/sicklecellwarrior and read up on the Advocacy links to your left (in the tag cloud) for tips on how to start a sickle cell organization in your neighborhood.

  13. Wow, it’s really amazing. I am 23 years now and also a SCD patient, i am a graduate with a degree in chemistry. I am preparing for my master degree now but am having a dought that i should not start because of my health condition, thanks to your interview with dr. Y i now have full confidence that i can start my masters degree.

  14. WOW! I AM SO GLAD TO HAVE STUMBLED UPON THIS SITE. I WILL BE A 32 YR OLD WITH SICKLE CELL ANEMIA.I CANT BELIEVE THAT THERE ARE SO MANY SCD PATIENTS DOING SO WELL.I HOPE U GUYS DONT MIND BUT A SISTA REALLY NEEDS TO VENT CAUSE ONLY YOU GUYS REALLY UNDERSTAND. I AM SEVERLY DEPRESSED I DONT WANT TO SAY DUE TO THIS ILLNESS BUT DUE TONTHINGS SURROUNDING IT. I REMEMBER AS A CHILD, SOMETIMES MY FAMILY WOULD NOT TAKE ME TO THE HOSPITAL WHEN I GOT SICK AND I SAW THAT AS BEING MEAN BUT NOW I UNDERSTAND.I GRADUATED HIGH SCHOOL BUT DIDNT GO FURTHER.MOST OF MY LIFE IVE DEALT WITH SELF-PITY DUE TO THIS ILLLNESS AND I LET THAT CONTROL ME. IM CONFUSED ABOUT ALOT OF STUFF THE MAIN THING BEING AM I AN ADDICT OR IS MY BODY DEPENDENT ON THESE POWERFUL DRUGS THAT THEY HAVE GIVEN ME. PEOPLE TELL ME THAT IM AN ADDICT BUT I REFUSE TO BELIEVE THAT. I READ ALL THESE COMMENTS BOUT DRUG SEEKING AND I FELT ALOT BETTER CAUSE IT LET ME KNEW I WASNT ALONE.I HAVE TWO DAUGHTERS,MY OLDEST TURNED TEN TODAY.I DO NOT HAVE CUSTODY OF THEM, THEY ARE WITH THEIR DAD. I FEEL LIKE A VERY BAD MOM FOR NOT HAVING THEM. I LIVE ALONE AND PRETTY MUCH KEEP MYSELF IN THAT MANNER,ALONE.ITS NOT SOMETHING I ENJOY BUT FIND MYSELF ALWAYS DOING.I HAE BEEN ON NON STOP MEDS FOR AT LEAST THE LAST I4 YRS OF MY LIFE. I AM ON METHADONE AND OXYCODONE AND I BEEN ON IT SO LONG THAT I DONT REALLY KNOW IF IT HELPS WITH THE PAIN ANYMORE AND I TAKE IT CAUSE THE METHADONE SAYS TO TAKE EVERYDAY N IF I DONT HAVE IT MY BODY WILL GO THROUGH VERY BAD WITHDRAWALS WHICH I FOUND OUT JUST HALLOWEEN WEEKEND.I AM VERY AFRAID FOR MY LIFE AND FEEL SO ALONE.I KNOW IM NOT ALONEBUT I STILL FEEL THAT WAY.I HAVE BEEN TO A TREATMENT CENTER 4 TIMES CAUSE EVERYONE ELSE HAS TOLD ME I AM ADDICTED AND AN ADDICT AND NO ONE ELSE HAS TOLD ME DIFFERENT. I WENT TO PLEASE OTHERS AND CAUSE IM A MOM TRYNA GET IT RIGHT FOR MY DAUGHTERS BUT ALL ALONG IM IN PAIN. PLEASE DONT LET ME GET ON THE HOSPITALS N DOCTORS.I USED TO BE IN THE ER LIKE 4 OR 5 TIMES A WEEK BUT NOW I DREAD GOING.I HATE THE HOSPITAL AND WILL WAIT TIL IM ALMOST DUE FOR ADMISSION BEFORE I WOULD GO CAUSE I KNOW ALL IM LOOKED AT IS A DRUG SEEKER. NOT A WOMAN WITH A PAINFUL DISEASE N JUST WANT IT TO GO AWAY OR EDITHER DIE.I HAVE SO MUCH I NEED TO AND WANT TO SAY I COULD GO ON N ON FOR DAYS. I AM IN TEARS AS I TYPE THIS CAUSE I HAVE ALOT OF EMOTIONAL BUILT UP INSIDE THAT I DI=ONT KNOW WHAT TO DO WITH.IM NOT CLOSE WITH MY FAMILY DUE TO THE QUOTE ON QUOTE ADDICTION SO I JUST STAY TO MYSELF.LIKE I SAID I COULD GO ON AND ON WITH THIS SO IF SOMEONE WITH SCD CAN RELATE TO THIS OR CAN HELP ME FEEL BETTER ABOUT MYSELF CONCERNING THIS OR JUST WANT TO DROP A LINE TO ME, JUST DO SO BY EMAILING ME AT QUIROB79@YAHOO.COM. I HOPE I HAVENT DISCOURAGED ANYONE BY ANYTHING THAT I HAVE VENTED BUT I NEEDED FOR SOMEONE TO HEAR ME OUT THAT CAN RELATE TO MY STATUS. THANK YOU!

    • Hey Quiana, it can be hard and disheartening dealing with sickle cell. You should join our facebook page at http://www.facebook.com/sicklecellwarriors
      There are so many people there that are going through similar situations. You are not alone my dear. Just try to take it one day at a time. Those with sickle cell often do not understand, so it’s great to have a community of others who really ‘get’ what is going on, how you are feeling, and what you are going through. Sending you hugs and love!

    • She lives in the US. I don’t think she can come to Nigeria at this time but I will forward you her information. If she contacts you, that means she is interested.

  15. this interview section is wonderful,i would like to be hearing things like this, is really encouraging,expecially this saying”God will never gives you what you cannot handle. i am so happy for you doctor,i would like to hear more of that,it really gives me the courage to move on.

  16. Hello Warriors,
    I am touched by Dr Y’s courage at being able to share her story. I am a Paediatric resident living with sickle cell. I had to take a 2 year hiatus to recover from a sub arachnoid haemorrhage and had to have repeated blood transfusions and now on hydroxyurea. I am still struggling to get back to my former self. It ain’t easy, so I will like to give a shout out to all the warriors out there. It ain’t over till its over!
    Abi.

  17. Great article. I’m in my last year of medical school and can completely relate. During some of my more stressful and time consuming clerkships I would come home in pain almost everyday, take a pain pill and fall asleep. It was difficult trying to study after working a long day in the clinic/hospital. But I passed everything and didn’t have to take any time off due to being ill, so I’m blessed for that.

  18. Just want to share this information with you, i came across an article published in 2010 about Niprisan production, it was mentioned in the article that Niprisan production has commenced not in commercial production by NIPRD. i follow up with the article and it was purchased for me at NIPRD office in Abuja. As I reside in Ireland am yet to receive it (Logistic issue), i will contact you when received. Do you have any information on Niprisan?

    • @Josiah, it is being produced again but only in very limited quantities. if you haven’t gotten it, I fear you may have been scammed.

  19. i am a sickle cell patient with yellow eyes since birth. my eyes is always yellow when i am sick or not and it causes so much embarrassment. please how can i make them white or green .my sister’s own is green so nobody thinks she is a sickler

  20. Hi, I would very much like to have the Dr.’s contact information. Can anyone help me with that? I do outreach at the Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter. Hi to the warriors I know and thanks for keeping it real about sickle cell disease.

  21. Greetings to ALL the Warriors and their families/loved-ones!
    My husband and I have two children. Our daughter is 19 and has a normal hgb and our sixteen year old son has SSD. This site is soooo inspiring. My husband and I both work in the healthcare arena and I’d like to ask about resources for our children warriors. I’m interested in reaching this population and providing counseling to them and their families. When our son was a baby, we started a SS support group but the families (esp the younger sisters with babies) showed little to no interest and now that my baby will soon be 17, then 18, I’m beginning to ponder on college/career and a future mate for him will be patient and understanding of his (SD) process. Is there anyone else out there working within the school system or other venues trying to reach our children with SSD? Thanks and this site is GREAT. My son actually told me about it last year. KUDOS!!

  22. Hmmm… Dz page as rily inspired me.. Just want to tell y’all dat nafn is impossible for God… I’m a living testimony of a sickle cell patient by birth but now AA… And there are lots of testimonies av bin hearin about SS changin to AA… I just want to urge everyone dat bin a sickler is nt our wish.. But wen we refuse to be affected by it.. We can and we will all achieve our goals…. I’ve bin insulted and make jest of during my high school days… I cried every tym i realised i’m a sickler.. Cos i’m always restricted from doin sum certain tins i really want to do.. But now… I’m in 200level.. In a dance club… I swim alot.. I play football… Just to mention a few.. All glory to God for makin me do everytin i want to do…Shalom… I luv y’all…

  23. Hi I myself do not have SDC, just the trait. Who I am is a mom and wife of SDC sufferers. I have 7yrs old boy and girl twins with the disease, and at this present moment, I honestly do not believe there is anyone more depressed in this entire world. This is really hard on me, but it is not about me. My heart breaks and aches for my husband and kids, I pray to God daily to give me their pain and complications. I am a ne

  24. hi guys am rily proud n inspired wt al ur stories…am nt a ssd patient but my boyfrnd is nd weneva he starts his crises i feel sick too bcause of d love we share…he defered his semester dis yr cause he got sick nd cnt walk wtout a support so they sed he’s goin to hav a surgery nid ur pryrs plx…nd hav any of u ever exprienc dat? Do u thnk he can walk again?

  25. I just wanted to tell you all that your amazing! I just found this page looking up information for my daughter. She is 3yrs old and has SCD. I am so grateful that God has brought her through. I really feel encouraged reading everyones stories and the love you show for one another. I hope you all know that there is someone out there who cares about you and what your going through! Dont be afraid to reach out even to strangers. I hate seeing people hurting and feeling alone, it breaks my heart. I would love to be a friend to anyone who needs it. I love that this site exists. My daughter is beginning transfusion therapy this friday and Im honestly still scared. I believe fully that God is with her, but the mother in my cant let the fear go. Im trying. You all keep it up! He didnt bring you this far to let you down.

    • @Kim, welcome to the family! Thanks for your kind words. We are all in this together. I hope that transfusion therapy helps your daughter. Make sure you keep an eye out on her iron levels because with blood transfusions, each one puts you closer to developing iron overload. Just something to keep in mind. Sending you both love and prayers. @SCW

  26. Hi, i’m glad to have found this site,gives me so much hope to continue doing more to empower myself against all odds from what most people said while i was growing up.

    I’m thankful everyday for the life i have now and the grace to achieve so much more with my life.

  27. Thank you Dr Y for the inspiration, I am an architect myself and the physical part of the job can be taxing So am really encouraged to see that at least someone else is handling physical strain at work well and God is seeing her through, God bless…

  28.                    A CRY BY SICKLE CELL ANAEMIA PATIENTS.      I have the most honour and respect to put these my few words,to your Organisation.              Am a Sickle cell Anaemia patient which have being having this illness for 3 decade nowand hope these my informations and innovation will be helpfull also with my reseach i have carried out about this my illness                          There is this drug called  H.M, I and some others Sickle cell anaemia patient have being consuming this drug for long and i did some research about the drug and my illness and i observed the drug  was effective to us  Sickle cell anaemia.                      Also this drug was in cameroon through a charity organisation ,so later the drug became scaresand very expensive  soon later ,it was sold for 15,500 Frs and each parkets contain 90 capsules,which is to be consumedfor a monthly period, and was to be taken daily from when you are dianogned as a sickler ,that is, at the age of 2 years  ,and from that moment you have to be consuming this drug till when death do you part. know presentlythe drug is unavaliable in the market, ie phramacy,hospital etc.Morever i will help you with some Vital information required for it production of the drug and if posble the package of the drug i consumed ,when the drug was in the market……………  the composition of the drug    ,,,,,,various Miligram and percentage of the drug   the proprietory blend of the drug   the directive of the drug   the drug was in capsule form.       Futhermore i will also suggest to you,as done in  my  research that i also notice certain HERBS and componients here in my country that can also rapidly increase the content of  RED BLOOD CELLs, HAEMOGLOBIN ,ETC an  if  being added to modern medication*H.M* as concerned sickle cell anemia ,i do beleived we are going to come out with the best modified  21 century drug for this illment,because both this medications need to be combine together,hence need team work,ideal sharing, etc          In addition i will wish to voluntee as part of your organisation,so as to share my ideals about the illnessand also to exchange,exploit,some ideals which i wrote down in a BROCHUR< i named it Users guide to sicklecell anaemia patient, i will provide the Brochure to you if and only if you will need it.                               Sir ,i and my fellow brother and sisters in Cameroon while not the world atlarge. really wishyou will help us with this drug production and also reducing the price for us,since we can not do withot this drughence it is not easy for us now because the drug can not be found in any pharmacy in cameroom neither inAfrica nor Europ,since the charity was close due to the death  of the REV father  who was running the charity,we are really in a dispaired condition,some dying.and it is one year today we are unable to lay hands on thisdrug hence disturbing our health and keep on going to the hospital day in and out,given us folio acid  yet still having crises frequently ,whereas with H.M ,NO crises,pains, blood stortage.etc     ALSO NO INTERNATIONAL DAY OF SICKLE CELL DIESESE ,why ,why and why,such day will help us to beaware of our self,illness, also have councilling about our illness  and other young couple to know thier Genetic status before getting marriage           So in a nutshel ,i wish your organisation to produces this drug for us sickler and to sell it for us the sicklerat an affortable price. many sickler are dying in the hands of fake Chines drugs, and we also need councillingsicne most sickler are ignorant of this illment, you really need to do something for us sickle cell patients. Childern from 2 years old to 24 years old are mostly affected,and I notice this illmentIs due to lack of mineral in the body system.                                                                                    Thanks for understanding
      your faithfully
          che wilson

  29. Hi I’m 55 years 9-24 I had not had a crisis in 30 year tell a place we’re I was living had black mold .This dropped my oxygen and he may hema globe 2 a 3.I have managed very well it had been so long that.for got what it felt like.Im still fight to keep my blood levels up above a 6 It’s been a year since this happen. But I’m a warrior. I take herbs I all ways have Chinese herbs, my body love them. Thanks for listening. Cynthia

  30. Doc. you were blessed you had co-workers that understood. My full time job was probation/parole officer, my part-time jobs were EMT and security guard and I was a volunteer fire-fighter. I loved all my jobs because I was helping my community but my supervisor with probation/parole had no understanding and threaten to fire me several times because I was out sick and although not that much only about once every two years. He would have fired me but his supervisor was understanding and help me with my problems when they did show their ugly heads. Sadly when his supervisor retired needless to say when I had trouble I was let go no matter how much I pleaded not to be put on disability but find me something less strenuous but please let me keep my job he said, ” there is nothing for you to do”. That was the worst day of my life and all down hill since that date, my life had no meaning until a couple of months ago a person offered me a part time job for 6 hours a week in the library and I was extremely happy, because it not much but it give me some purpose for living. Every person on this earth must have some purpose for living. I have two degrees one in justice and one in social work, yet no one will hire me. Enough said, I am just glad that more Sickle cell patients are proving that we(sickle cell patients) are not all drug seekers. Please keep up the good work.

  31. I am glad to see that there are survivors above my age 59 and I just was looking to see if it wasn’t just luck or mind set I don’t know if will be the end of me or something else I have never done anything to use it as an excuse my mother didn’t either and I think that is why I have survived this long and I am great full to have lived this long. My symptoms have changed so I have to learn what my new triggers are but I have met very few others and their illness was more severe they have padt on but wrre young at age 38 . Happy to see others have survived longer and welcome any tips god bless

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