The Blog

Sickle Cell Awareness remains a challenge.

Aug 24, 2017

Over the past month, the Toronto Star has published a couple of articles about the mistreatment of a young man in police custody who happened to have sickle cell disease. The articles are difficult to read and highlight some of the ongoing challenges faced by the sickle cell community because of a lack of awareness of the nature of this disease.

In response to the story highlighted in these article SCAGO, as a patient advocacy group, felt compelled to respond with a letter to the editor.

Here is the link to that letter: Sickle Cell awareness is sadly lacking

We encourage you to share your thoughts. 

Who wants to go on a Holiday?

Aug 16, 2016

By Sister Sue

Canadians love to travel! We are socially and culturally inquisitive and let’s face it, one fifth of us are foreign-born immigrants. We have family and friends we need to keep in touch with and visit. We need to plan that trip but we're scared because of our sickle cell disease.

Trips abroad can be exciting and daunting at the same time. Having a medical condition just adds to the stress. A little forethought and preparation can help decrease that anxiety and set us on an explorer’s path.

It wasn’t too long ago that people with sickle cell disease (SCD) were advised not to travel on airplanes. In the “old days”, airplanes were not properly pressurized and oxygen levels inside the cabin could fall and trigger serious problems in people with SCD. That isn’t the case anymore as airplanes are well pressurized and the air in the cabin is properly regulated. This makes air travel much safer for people with SCD.

Whether it’s an airplane trip to Lagos, a Caribbean cruise or a road trip across country, preparation is key! Here are some things I think you should think about before you go:

Before you buy your ticket -

  • If you’ve been in hospital recently, or if you have been seriously ill, you should check with your doctor that you are fit to travel. Sometimes we have to give our bodies some time to heal. Everybody is different. Maybe this year you explore your neighborhood but “watch out world… next year we’re coming!” Talk to your doctor if you’re not sure what you should do.

OMG! The doctor has given you the all clear!

WHAT?! You’ve purchased your ticket?!

OK! Time to make a “TO DO” list!

Before you travel –

Like everyone else, you need to check on the usual stuff. Travel advisories, visa requirements, recommended immunizations for the area you plan to travel to. Specific to people with sickle cell disease however this is the stuff you need to think about:

  • If you are traveling to a destination where malaria is present, it’s a good idea to get malaria prophylaxis (malaria prevention tablets). Talk to your doctor
  • Diarrhea causes dehydration and dehydration is especially bad in people with sickle cell disease. Diarrhea is common in tropical countries so be prepared to drink bottled water if you are not sure if the water is safe. Also ask your doctor about antibiotics to treat traveller’s diarrhea and how to use them.
  • If you are on any medication (Like Pen V or hydroxyurea), make sure you have enough to last you for the duration of your trip. It probably makes sense to have a little extra, just in case you have to stay a bit longer. Remember, your medications may not be available at your destination.
  • You should pack your medication in your hand luggage not in your checked baggage. Checked baggage doesn’t always make it to where you are going!
  • Get a summary of your medical history form your doctor. Of course you’re not planning to get sick when you are on holiday, but things happen! At the very least, know your steady state and the names of your medications. This will be very helpful to make sure you get good care. If you are traveling to a place you have never been before, it’s a good idea to do a little research where to go if you do get sick. Being prepared will give you piece of mind.

On the day you travel -

The most common problem people with sickle cell disease have during airplane travel is painful crises. You can minimize your risk by doing the following:

  • Stay well hydrated - drink a lot of water before and during the flight. Although they do give you things to drink on the plane, you should still buy some bottles of water to take with you on the airplane - remember to purchase these AFTER you have gone through security at the airport.
  • Keep warm during the flight - airplanes can get very cold, so dress appropriately and carry a jacket or a blanket.
  • Avoid sitting for very long periods without moving. Stretch your legs, pump your calves, take a walk to the washrooms - get your blood flowing especially on long flights.
  • Make sure you have some pain medication with you in your hand luggage so that if you do start having pain you have something that you can take right away. Don’t wait!
  • Try to get some rest during the flight.

While on holiday –

Have fun but be sensible!

  • Alcohol causes dehydration. Don’t overdo it! And keep drinking water - Lots of it!
  • Just because you’re on holiday doesn’t mean you have to party all night! You still need to get your rest.
  • You know yourself better than anyone. If something isn’t right, seek medical attention sooner than later. Emergencies are much more difficult to manage.

Don’t let sickle cell disease hold you back. Plan, prepare and enjoy your adventure! 

Safe travels everyone!

Disclaimer: The opinions expressed in this blog are entirely those of the blogger and do not necessarily reflect the opinions of SCAGO.

Doreen Alexander: It seems like yesterday

Jul 25, 2016

Doreen Alexander

A reflection on my journey as a volunteer serving and advocating on behalf of the Sickle Cell community at the Sickle Cell Awareness Group of Ontario (SCAGO) – 2011– to present

It seems like yesterday, but it was back in February 2010 at a sickle cell fundraising event for Grenada that I heard Ms. Lanre Tunji-Ajayi, the then President/CEO of SCAGO, spoke about the need for everyone to be aware of sickle cell disease and get tested. She also called for volunteers to join SCAGO; to help educate and inform the public.

As a nurse, unfortunately I have heard the cries of many sickle cell patients in pain who are often misunderstood or dismissed by health care professionals while in desperate need for support. Ms. Lanre’s empowered speech drove me to ask her how can I help and from there my journey began.

I started off as volunteer who had little understanding of what sickle cell disease was all about even though I was a nurse. However, I positioned myself to learn quickly. After leaning as much as I could, I developed a passion to reach out to those living with the disease but, more than anything else to help educate as many people as possible about the need to get tested and to dismiss the myth that sickle cell affects only the people of African and Caribbean descents.

On completing my first year of volunteering, I was asked in 2011, to take on the role of the vice president of the organization. I honestly did not think that I was capable of carrying out such a task being so new on board at the time. However, having someone like Ms. Lanre to work with made it easy to fulfil the role. After just one year in the vice president’s role, I was nominated and voted to become the president of the organization and I served three years in that position (2012-2015). Ms. Lanre was a great mentor during my volunteer years at SCAGO and under her leadership; I truly have learnt how to effectively advocate for those living with the disease and their families with all levels of government.

I was able to achieve much with the help of the many volunteers and supporters of SCAGO, to whom I am grateful. I have done many outreaches at schools, churches, community centers and at many local events across the great Toronto areas (GTA). In 2014, I had the privilege of working with many volunteers to organize the first advocacy day meetings at Queen's Park. In the meetings with the support of many health care professionals, patients, families and supporters, I was able to help educate government officials about sickle cell disease and sit with the Minister of Health and Long Term Care as an advocate for the sickle cell community.

The asking from the Minister of Health and Long Term Care included the need to have more established comprehensive care centers across Ontario, a registry and the need to have more educational support for health care providers; to provide better care across the province of Ontario. At the federal level of government I have worked with the national – SCDAC as the president of SCAGO to again educate and inform government officials on the disease and to seek support for a national strategy for sickle cell disease.

Sickle Cell Disease is dear to my heart and I appreciate the opportunity to serve and to advocate on behalf of the population that endures this chronic disease daily. I stepped down as the president in August 2015 but, I have not stepped away from the cause. Presently, I sit on the board of SCAGO as the past president and will be doing ongoing volunteer work in many capacities within the organization; serving and helping to meet the needs of those living with this chronic disease.

My mission as a volunteer is to be an ongoing voice for those who do not have a voice, because of their day to day discomfort and limitations due to the disease. The fight is not over and it will never be over until there is a cure for sickle cell disease! Therefore, my work is not over as an advocate for those living with the disease.

SCAGO have given me a different outlook on life with the drive to do more. Many thanks to the community, the supporters, donors and all the volunteers in their various capacities for working with me but, most of all I am grateful to the patients and their families who trusted me and allowed me the privilege to serve and advocate on their behalves.

Doreen Alexander

Past President of SCAGO

Blood Donors Are Heroes!

Jul 25, 2016

2016 SCAGO HeroesBlood is that thick, red liquid that flows through us all. It transports oxygen and food to our tissues, and waste products back to organs where they can be processed and removed from the body. It is a complex liquid made up of red blood cells that carry oxygen, white blood cells that protect us from germs, and platelets that help to stop blood loss when we are injured, all suspended in a pale yellow liquid called plasma made up of other vital proteins. It is one thing we all have to give, one thing that can save the life of an accident victim, a child with cancer or sickle cell disease, a mother during a caesarean section, a grandfather with a bleeding peptic ulcer.

So, when last did you donate blood? Have you ever thought about being a blood donor? Most of us only think about it when we know someone who is very sick and needs blood urgently, or if there’s a blood drive at school or at work, but it certainly isn’t something we think about regularly. Yet, many of us will need blood at some point in our lives and perhaps now is a good time to think about where that blood will come from. We assume, actually we expect that when we, or our loved ones need blood, it will be there, immediately available! The truth is, some people who need blood urgently will have to wait because demand may exceed supply, and that wait will severely compromise health and possibly survival. Depending on the circumstances, a transfusion can mean different things. The great thing about blood is that it can be separated into different components. Each unit of whole blood that is donated is separated into red blood cells (called packed cells) and plasma. Plasma can be further divided into components including: platelets, which help blood to clot and cryoprecipitate which contains clotting factors that also help to control bleeding. So although we mostly think of transfusions as receiving blood (which we now know are packed red cells) some people will receive platelet transfusion and others will need cryoprecipitate. That way we get the most out of a single donation.

Nowadays, we like to talk about heroes a lot. Social media is replete with stories of people who happen to be in the right place at the right time and who act in heroic ways and are immediately recognized for their action. Their pictures or their videos are all over the Internet. 100,000 likes later they get to be on Breakfast TV and Ellen, alongside those they have saved. Names and faces that become familiar to us all, for a while anyway. But heroes aren’t always publically recognized. A one-time blood donation could save the lives of 4 people – FOUR people who might each need a different type of transfusion! A regular blood donor could give blood every 2 months, that’s 6 – 24 lives made better in a year! Even if you give blood once a year, what could be more heroic?

People with sickle cell disease (SCD) need you to be heroes more than ever. Sickle red blood cells have shorter survival times than normal red blood cells so people born with SCD have long-standing anemia, or weak blood. If for any reason, their blood count falls, and their blood weakens further, they can’t compensate for that fall and could go into life-threatening shock. Only an urgent blood transfusion can save their life. Additionally, some people with SCD, most often children, have a very high risk for having a stroke, which can cause them to become permanently disabled. Fortunately, there is a way of predicting those children with a high risk for having a stroke and doing something about it. That something is giving blood transfusions regularly, usually once a month. As you can imagine, that requires a huge amount of blood.

Not everyone can donate blood of course, but becoming a blood donor is a lot easier than you think. You can find the nearest Canadian Blood Services clinic nearest to you on line:


As well as all the information you will need about what to expect before and during your donation. If you want to do something amazing, that can truly make a difference to someone’s life, be a hero - become a blood donor!