Monthly Archives: November 2013

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Very educative scientific session on Haemophilia today. Well worth the time.

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RE.NE.GADE!

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Beginning of the semester. I had my ‘natural Ghanaian’ hair. Obviously there is NATURAL hair, then there is mine. Relative to the weaves, my hair is natural, though it is relaxed.

Fifth year has been interesting so far. In my seventh week now, it feels like I only just started medical school.  As expected, at the beginning of the academic year, everyone was looking their very best. Guys all clean-shaven and looking delicious. The ladies, got to say, my classmates, they kill it every day.  Gorgeous braids and weaves from almost every country on the planet. (Lord knows I’ve never heard of some of these countries)  Everyone really was looking good. I certainly was. I just decided to go with a different kind of look. #Renegadestyle. I started my semester not with braids or a weave but rocking my natural ‘Ghanaian’ hair.

Reason? Well, in second year, I noticed the cyclical hair changes of my colleagues. Without fail, the cycle kept recurring semester after semester. Thing is, hair styles have a ‘life-span’. In some four to six weeks from the time t, that weave is old. It’s just gotta go! Everyone wants a new look. As if on cue, the weaves come off and for a week or two everyone rocks their ‘Ghanaian’ or ‘Nigerian’ hair, then, the cycle repeats.

Really? Hair? You are probably thinking, this girl has a lot of time. Cyclical hair changes? Who pays attention to that? Okay, let me get to it. Thing is, I have always considered myself a bit of a renegade/ rebel/non-conformist. I always chart my own course. The whole follower thing, doesn’t really work for me. So, for something as trivial as, what to do with my hair? Well, I put some thought into it. I certainly do not want anything anyone else has. No thank-you.  I mean, if most people will have a weave at this time, that certainly is my cue to do the exact opposite.

ImageBeing a renegade gets me in quite a bit of trouble with authority from time to time. You can certainly figure out why. As they say, trouble is the spice of life. Oh wait, no one says that. They should. Conforming is boring! I like different, I am different, I do different!  What is that they say about if something ain’t broken…The genesis. How did it happen? How does a person become non-conformist? I have come to the conclusion that for me, being told too often that I could not or should not do one thing or another led to this outlook. I guess I was on a mission to prove everyone wrong, and again, ‘if it ain’t broken, don’t fix it’.

Case in point, my love for sports.  In basic school I almost made it for the track and field team but someone brought up sickle cell and I was out. In high school I really wanted to try out for the basketball team. Again sickle cell and I was out. Thus after high school, I played basketball with the guys, I got different friends to train me. There was jogging too. Just because I was prevented from engaging in sporting activities, I decided that is what I want to do with my free time. Don’t tell me I can’t do something. That only upsets me and inspires me to get it done! Just an aside, persons living with sickle cell are perfectly capable of participating in sports/ exercising.  Within reasonable limits of their health of course.

Being the renegade that I am, there really is no way I am going to live the ‘expected’ sickle cell  life. People expect a sickly person who just can’t do much. First, a little reorientation.  Persons living with sickle cell can live healthy lives, I cannot emphasize this enough. Second, I am too much of a hyperactive person to do the sick thing. No, I’ll pass. I got sports, church,family, friends, social activities and lastly school. I don’t have time to be sick. “ain’t nobody got time for that!” Of course I have been blessed in so many ways, my health certainly is my biggest blessing. I really am a walking testimony, it is worse for others but there is a lot of will power at play here.

There is the thing with medical school. After high school, when it came time to decide about university, my mom did a bit of asking around. A few well meaning people advised that I not pursue medicine because the stress might just exacerbate my condition. She really had my best interest at heart. It certainly has been difficult, but guess what, I’m still hear. I guess I’ll be singing Chris Brown’s-Look at me now, in a couple of years.  Just because it is expected that medical school is going to be unbearable for me, I decided I am “gonna kick ass”.  If I wasn’t this much of a  renegade, I would have probably accepted that advice five years ago and given up on my passion.

Then there is sickle life. People generally do not speak openly about their health, certainly not Ghanaians, but really, why should they? Persons living with sickle cell, generally keep it secret. I think it has something to do with the fact that y’all expect us to break into several pieces right in front you, or worse still, just up and die. Don’t know what it is? I always wondered why in school kids with asthma did not mind telling everyone but those with sickle cell hid it like it was contagious or something.

So, I tell everyone I have sickle cell disease. It seems to have a bit of the non-conformist element going on in there, but that certainly was not the reason. Maybe it helped, because it is in my nature to be different. Whatever it is, I said it, you all know. I pretty much stuck a person living with sickle cell sticker on my face. No, I am not going to die tomorrow. Please don’t act like I am.  I am just passionate about this cause and don’t mind putting myself out there. I just want to reach as many young people as possible, change misconceptions about sickle cell disease and ultimately assist you make an informed life choice.

Please join me. Be different, stand out. We can’t all be full on renegade, but we can all stand up for the cause. Please get tested. Know your haemoglobin genotype and that of your partner. Make an informed life choice.

#Renegadethings #nonconformist #saidit!

Regards,

Sefakor-Enam.

PHYSIO JUST GOT PHYSICAL!!!

You have probably figured by now that I love sports. Yeah, I absolutely love waking up early to go jogging. I also love basketball. I play as often as practical. I am no Kobe Bryant or ‘Mr. Kardashian’ (well, when he is not sticking his nose where it doesn’t belong, figuratively, of course),I dabble. It keeps the adrenaline and endorphins up. Maybe it has a little something to do with all the testosterone I get to float around in when I’m on court with the guys. wink*

Then the diagnosis came, avascular necrosis of head of femur! Oh, and it is bilateral.Damn!  Now, I am under strict medical advice to CEASE AND DESIST from these activities. You probably know the details from my earlier posts, constantly adapting part 1 and 2. Basketball is certainly off my ‘to-do’ list. Jogging had to go as well, Lord knows the kind of damage I could be doing to my ‘avascularly necrosing’ femoral heads with my thrice weekly jogging routine. With increased demand for blood by muscles during exercise, jogging really was not a good idea. Basically, the bone is dying because it is not having enough blood  and I want to exercise? No way! The doctors are just not having any of that! So these days it is just digiti minimi and her siblings who get to workout, with my constant typing.

Thus, my journey with the physiotherapists began. Yup, remember, Aggressive physiotherapy? I asked about alternative physical activities, immediately the ‘cease and desist’ order was written in my folder. The doctor suggested swimming. Apparently it helps a lot. The whole ‘upthrust thing’. You get a good workout without putting so much weight on  your hip joint. There is just this little issue. I have a fear of swimming. This is no phobia. It is a very rational fear of precipitating a vaso-occlusive crisis from the contact with  cold water. I am currently on a search for a heated pool in Accra, do let me know if there are any. I already got my swimsuit. (Y’all probably gonna get a pic of me in it when I find that heated pool)

Now physiotherapy has been fabulous, mostly. Its been a love-hate relationship. Some days, I love, most days, I absolutely love to hate it. I already shared some of the low points with you. Before I started physio, I actually thought  it will be just supervised workout sessions. Oh, I had it so wrong. There were a few exercises to help improve circulation, but none of the hard core stuff I was expecting. I wanted more. Bring on the real exercises people!

For the longest time, ( it really felt like an eternity) they had me on the fancy machines. I love them, they are great. I have not had any major pain since I started. I get the electromagnetic waves that stimulate muscle contraction and relaxation, helps with blood circulation and apparently, a lot more. Then I do the infrared physiotherapy treatment and I am good to go.

A few weeks ago, two thing happened. 1. I got a new physiotherapist. 2. Physio got physical. Yeah. Just when I thought I was done, Miss new physiotherapist wanted me to do some exercises. I almost broke into my happy dance, but you know we got to keep our act together all the time (Miss Medical student/ the ground under my feet should be worshiped, blah blah blah. ) This new physiotherapist just shot to the top of my favorite people’s list!

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Horizontal bars- for support during the squats and abductions. Stationary bike. I could be on it all day, but with the existing pathology that won’t be a good idea. (Skeleton in the corner. I always wonder why ‘he’ is facing the wall)

It was squats, and another exercise which had me bearing full weight on one limb while I abducted the other, then the stationary bike. Now, technical difficulty. I was coming for my fancy machine physio, and as usual, I was all dressed up. Oh, I really took my time with that. Make up and clothes on point, I was looking good and feeling it. Now you want me to do what? Squats? Thing is, I was in a skirt. A very nice, one at that, some may say tight. Anyways, “ y’all know I ain’t ever gonna pass up on  a workout.” I pulled my skirt up and got to it. Mmhmmm!

Oh, those squats. They felt good. I could hear my gluteal muscles saying thank you. (Lmao. This is just weird. Pun definitely intended, please say you get it.) So on behalf of my gluts, thank you Miss Physiotherapist. Of course she is not trying to give me a better looking derriere, but I guess this is what the economists call opportunity cost, or not. Anyways, with the exercise that had me bearing full weight one limb at a time, we discovered that, whereas it was painless on the left, it was absolutely unbearable on the right. Her conclusion, when walking, my left  leg is compensating for the inactivity of the right. If we don’t get me to exercising ( using those muscles) they will atrophy. Nice catch Miss Physiotherapist. Really, tell me she does not deserve to be one of my favorite people.

Now  the weird thing is, I actually gave my MRI to a sports and exercise medicine physician to review.  I just wanted to know if there was a level of physical activity I could get back to. Simply, I wanted to go jogging and ran around on the court with the guys! So he checked it out and he agreed with the orthopedic surgeon in most parts. For, physical activity, he said I could sign up for a gym, that had skilled personnel to cater for my specific medical condition. He actually mentioned the stationary bike and treadmill (set to walk, I have been cleared to walk by the orthopedic surgeons, no conflict there). No kidding, this discussion was on the day before I went for physio and had the therapist start me on actual physical physiotherapy. I did not say anything to her, she just asked me to go do the exercises!

Why is this big deal? Well, I was just considering signing up for a gym on my allowance. Yes. Out of my own pocket. There was no way in hell my parents were going to fund this. This gym with the well trained personnel and equipment to die for is a long way from school. I would have had to fund transportation too and also there is that little thing of finding time within the hectic fifth year schedule to go through traffic just for a workout , then come back to school. Yeah, it was looking very unlikely. Then out of nowhere this Godsend asks me to go  workout?

The physiotherapy department is within the hospital, on campus, I don’t have to leave school. The cost? Well, it forms part of my physiotherapy treatment, thus is covered by my health insurance. I pretty much get to workout for free. Technical difficulty tho, since I sneak physio into any free time I get during the school day, and my days have me all dressed and glammed up, I guess it is bring your gym clothes to school for me now. (errmm NO! I actually like playing dress up)

Pretty much, all things working out for my good. Init? It is a mindset thing. This glass is half full. I’ve missed a couple of physio appointments over the past weeks because of my busy schedule. The therapists won’t be amused. If you don’t hear from me, it will be safe to assume they had my head, literally. Will let you know how it goes. For reals tho, I’m gonna get my own physio equipment as soon as I can, that way I can get all my sessions done at my own convenience.

Regards,

Sefakor-Enam.

PERSONALITY PROFILE- PROF. KONOTEY-AHULU.

“…the patient is most important. There is a lot of focus on the disease. I focus on the patient… Do u know about my achiever’s foundation? Persons living with sickle cell disease like you. Medical students, doctors, even consultants meet up and share their experiences living with the disease…”-Prof. Konotey-Ahulu.
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Professor Konotey-Ahulu and yours truly. If you can tell me the biography of the Kardashian clan from before Kim got famous, and you don’t know of this man, it is really unfortunate. As he says, HTGT-Here today gone tomorrow. The passing of Prof Kofi Awoonor (RIP) reminded him again of HTGT. We have living African legends to celebrate. to inspire our youth to greater heights. Get ready to be blown away!

Professor Felix Israel Domeno Konotey-Ahulu, is one of the world’s foremost experts on sickle cell disease. He, in collaboration with some colleagues, undertook research that led to the discovery of Haemoglobin Korle-Bu and Haemoglobin Osu-Christiansborg. (Exactly, it goes beyond HbSS and HBSC). Oh, he actually coined the term gnatopathy. (Yeah, that’s who I’m talking about)

I heard about the good professor many years ago and I knew I had to meet him. There simply, in my opinion, is no one, who has as much knowledge on this condition as he. It was a pleasure  meeting and interacting with him.

Professor Konotey-Ahulu was one of the recipients of the Dr. Martin Luther King Jr. Foundation Award “for outstanding research in Sickle Cell Anaemia” in 1972, and in 1976, received the Guinness Award for Scientific Achievement in the Commonwealth “in recognition of his work in applying science to the service of the community”. He also received the 1999, Third World Academy of Sciences Award for outstanding work in the Basic Medical Sciences. In the citation to this award “his outstanding contributions to haemoglobinopathy” were mentioned, but also his “first description of some 5 new physical signs in clinical medicine” and  invention of the ‘Male Procreative Superiority Index’  (MPSI) which shed light on aspects of  African anthropogentics, among others. In 2008, he received the Ghanaian state award, The Order of the Volta-Officer for “distinguishing himself in medicine/research into sickle cells”These are but a few of the many awards he has won over the years.

In 2004, Professor Konotey-Ahulu was named one of the 100 greatest Africans of all time, in a publication by, New African, a popular monthly based in London. The list included greats like Nelson Mandela, Kwame Nkrumah, Kofi Annan, Martin Luther King, W E B Du Bois among others. Prof Konotey-Ahulu requested that he be replaced by Dr. J E Kwegyir Aggrey, about whom he wrote an article in the same publication later that year. (link below)

Professor Konotey-Ahulu, is well travelled, holding lectures in many countries all over the world. He was Annual Visiting Professor to Howard University College of medicine, and Honorary Consultant Physician to Howard University’s Centre for Sickle cell disease, Washington DC. In 1998, He was appointed ‘Chief visiting clinician/scientist, Kenya Medical Research Institute (KEMRI)’ where he is on the editorial board of the African journal of Health Sciences. Between 1965 and 2001 he published more than 185 articles, editorials, book reviews and comments. (261 with 10 yet to be published at last count)

A prolific writer, he was at one time, the Editor of the Ghana Medical Journal. He was also a member of the WHO Expert Advisory Panel on human genetics and a temporary consultant to the Commonwealth Secretariat’s Medical department in London. Among his published works, are a 643 page book titled THE SICKLE CELL DISEASE PATIENT and a 32 page booklet titled, SICKLE CELL DISEASE-THE CASE FOR FAMILY PLANNING. Having visited many sub-Saharan African countries, studying AIDS, he published a 227 page book titled, WHAT IS AIDS?

He is a visiting consultant physician at Cromwell Hospital, London and Valco Trust Hospital Ghana, where he is involved in community work and adult education in the local languages. He was an external examiner in the University of Ghana Medical School’s department of Medicine and Therapeutics. Professor Konotey Ahulu was appointed Kwegyir Aggrey Distinguished Professor of Human Genetics by the University of Cape Coast, Ghana in April 2000.

Professor Konotey-Ahulu is very active on new media. His website www.sicklecell.md is a very credible source of information for persons living with sickle cell disease and everyone interested in the subject.  There is a blog associated with the website. Please check it out sometime. He is also quite active on Facebook and Twitter, please like or follow his pages.

Prof. Konotey-Ahulu  is Ghanaian, born in Odumase-krobo on 12TH JULY 1930. He is married to Mrs Rosemary Konotey-Ahulu with 3 adult children and several grand kids. His early education was in the Gold Coast (Ghana). He proceeded to the United Kingdom for his premedical and medical training. After which he returned to Ghana. Most of his graduate work was  in the United Kingdom, but he always returned.  Professor Konotey-Ahulu is a devout Christian and has even written a hymn. He was also one of the founding fathers of Korle-Bu Community Chapel (Accra Chapel).

I am really very grateful for the opportunity to meet Prof Konotey-Ahulu and for all the work that he has done and is still doing in the area of sickle cell disease. I read his work, and I am impressed with the passion with which he educates people and corrects the misinformation out there. I wish him the very best, good health and  many more years of life.

Sources:

[pdf] Felix I D Konotey-Ahulu FGA Key achievements.

[pdf] DR FELIX I D KONOTEY-AHULU, CURRICULUM VITAE. September 2002.AD

http://www.modernghana.com/newsthread/132669/52/8289