Sickle cell Network Uganda Interview on NTV Morning@NTV 25th June 2014

Evelyn Mwesigwa and Ssebandeke Ashiraf of Sickle cell Network Uganda interviewed by Brian Mulondo of NTV at Morning@NTV on 25th June 2014 discussing sickle cell disease in Uganda

SICKLE CELL NETWORK UGANDA IN BAMUNANIKA

On Saturday 28th June 2014  Sicklecell Network Uganda had a meeting with parents of people living with sickle cell disease in Bamunanika Luwero District. We met 12 parents but there was horrific stories which i want to share with you. 
There was a gentle who said that he has a child with sickle cell disease but has lost four babies and at first he did not know what the cause of their death. Another lady has two children with sickle cell disease and when a girl of 25 years was introduced on Hydroxyurea she became unconscious and became mentally sick. She was weaned off hydroxyurea but she still has the effects.

Another horrific story an old who seemed to be in her sixties. She gave birth to two children and they died early. She did not know the cause of their deaths. She now has 3 children with sickle cell disease and the husband chased her claiming that she is the cause of sickle cell.

There is still a lot of ignorance. These people have a nearby clinic which treat people with sickle cell at Kasan Health Centre IV but it work for only one day a week on Tuesday. And in most cases they have to get treatment from Mulago Hospital.

Stories are heart-aching. People are still ignorant about sickle cell a lot needs to be done.

We call for your support to bring to an end this monster.Your support is welcome.
If you have any group of people you want us to sensitise in your community, school, church, mosque you can invite us.

Waswa the sickler

On 5th July 2014 I was in Mulago hospital acute ward to see my colleague who has a son admitted. I found a 13 year boy who was in a crisis he has sickle cell disease. But having sickle cell disease is not what I want to look at here. This boy was brought by another kid younger than him. Because the sickle cell clinic work only 5 days he was brought to Acute. He had been brought in morning but upto 9pm when I left hospital not his mother or dad had come to see their son. When asked why his parents had not come he said his mother is at home looking after her 3 years child whom she can't leave alone at home.
My friend Evelyn tried to talk to nurses to treat him. But one nurse told her that she can't treat him because he didn't have parents. But after some time they treated him. Another backbreaking statement the nurse made was that parents are tired of children with sickle cell. This is a statement made to a mother of a child with sickle cell who was writhing in pain.

These are every day stories which are happening.
A week before a father contacted us as Sicklecell Network and his son was admitted in Mulago Hospital. My colleague Evelyn went and talked to the mother. The mother is UPDF soldier. She found her heartbroken she was about to give up and had vowed to take her son and drop him at her mother's home to save her job in the army. After the discussion she agreed to take care of her baby and were discharged
A lot needs to be done. I shall keep you updated about what we can do for this innocent boy who never asked God to give him sickle cell

SICKLE CELL AWARENESS KYENGEZA CATHOLIC PARISH

On Sunday 28th September 2014 Sickle cell Network Uganda had sickle cell awareness campaign at St. Kizito Catholic Church Kyengeza. Kyengeza is located on Kampala – Mityana Road and is under Kiyinda – Mityana Catholic Diocese.

Father Lazarus Kiggundu cautioned the Christians against the scourge of sickle cell disease.
He also noted the worrying increase in the number of people with sickle cell. He also noted that many people are not taking their children to hospitals because of ignorance about the disease. Fr. Kiggundu cautioned the Christians against sickle cell and warned those who have been calling it witch craft to stop it immediately. He promised that he is going to lobby other church leaders in the diocese to prioritise the genotype results for all intending couples as it is done in HIV. He commended the good work done Sickle cell Network Uganda of taking sickle cell awareness campaigns to rural areas.

Ms Evelyn Mwesigwa ED Sickle cell Network Uganda

Church congregation

Ms Evelyn Mwesigwa of Sickle cell Network Uganda taught those who care for people living with sickle cell disease how to manage them. She advised everyone to test and know their genotype to save the next generation.
“If you have not yet married please go and test to ascertain whether you have the sickle cell gene or not” she cautioned
“If you carry the gene do not get a partner who has the gene. Go for some one who is free from sickle cell gene. We need to have a sickle cell free generation. No one wants to see their child in excruciating pain.’
Edward a 10 year old who had come with her mother gave testimony about the pain he goes through.
“When the cold weather sets in I get a lot of pain which is inscribable” he said in agony.
His mother complained about the higher costs of treating his son.
“I have to take him to Mulago which is expensive for. We ask government to open up a sickle cell clinic at Mityana Hospital to save us from the higher costs of going to Kampala”

Many people complained about the lack of testing centres and even those that exist charge outrageous fees.
“I took my grand daughter for an Hb Electrophersis test in a private lab in Mityana and they charged me 60,000 Uganda shillings” Mr. Mulondo said
We extend our gratitude to Father incharge of Kyengeza Parish Fr. Lazarus Kiggundu assisted by Fr. Mutyaba and Fr. Galiwango for organising this campaign and accommodating us.

PLEASE VOTE ME FOR WEGO HEALTH ACTIVISTS AWARD 2014

I have been nominated in this year's WEGO Health Activist Awards 2014 #HAAwards in honour of my work in sickle cell advocacy. I have been nominated in four Categories

1. Best in Show Facebook
2. Best in Show Twitter
3. Best Kept Secret and
4. Best in Show Blog

To vote for me please visit this link and click on endorse below my photo
https://awards.wegohealth.com/nominees/789

About WEGO
WEGO Health is a Boston based kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.

About the Categories

Best in Show Facebook

Facebook is a community all its own. Over the past few years it has transformed from a place for a personal profile to a real hub for discourse, conversation, and community. Who has the best Facebook Group or Page of anyone you know? They have balanced the tricky interface of Facebook and turned it into an opportunity to reach more people in a medium people are used to. They foster an environment that people want to "Like" and have a ton of interaction there every day. The leader of the group may have other sites - but he or she really exemplifies why Facebook can be used for good.

Best in Show Twitter

It's not easy doing amazing things in only 140 characters - but there are some people who truly excel at it. Taking an involved, difficult to explain story, piece of research, or words of support and creating an easily digestible thought is difficult. There are Health Activists who have connected with others and raised awareness just by tweeting - let's celebrate those using Twitter for their advocacy with an award! Whether they've created their own Twitter chat or participate actively in others' chats - they are the model of Twitter for #health.

Best Kept SECRETS

The internet is a vast place, making it near impossible to find all of the amazing content that exists. But people often have the best recommendations – so which Health Activist would you recommend that everyone follow? Who is a hidden gem who creates great content and should have the spotlight shone on them? Who deserves double the readership because they are doing great things as an advocate? Help us uncover the best kept secret of the online health space!

Best in show Blog

Whose blog do you absolutely love? Their writing is exceptional, their "voice" admirable, and their writing is just really worth reading. You think anyone wondering why patients or caregivers would blog about health should read this Health Activist's blog - it will make the case crystal clear. They have great info, raise awareness, and do whatever they can to help their community by using their blog. They may be active on numerous social platforms - but the blog is their bread and butter - and they are a great model of how to be a blogger.

Hydroxyurea is not a cure for sickle cell disease

Recently, a Ugandan daily newspaper carried a headline that a cure for sickle cell disease had been found.

This gave a lot of hope to many people who are suffering from, and those who have children with the disease. I personally received a number of phone calls and emails; my Facebook wall was filled with messages informing me of a sickle cell medical breakthrough, while others were congratulating me.

My friend, a mother to a son with sickle cell disease, also got numerous calls. Her friends and relatives were asking her to take Isiah to Mulago to be cured of the disease. The media report was in reference to a clinical trial for Hydroxyurea, a cancer drug that is also used to treat sickle cell disease in USA and Europe.

The trial is expected to start in Mulago next month, with 200 patients between 12 months and 47 months taking part. To many, it seemed as if the drug was new in Uganda, and it was going to eliminate sickle cell. Hydroxyurea is not a cure and has been in Uganda for some time. My first interaction with it was in 2011, when a doctor prescribed it. It was difficult to get it in pharmacies, but these days it’s common everywhere.

Hydroxyurea was first synthesised in 1869 in Germany, by Dresler and Stein. It started as an anti-cancer drug. Today, it has gained wide acceptance among haematologists as the number one medication for sickle cell disorder. This drug works by kick-starting, within the bone marrow, the production of potent blood cells that all babies are born with, the foetal haemoglobin (or HbF).

By the time a baby reaches the age of six months, HbF has been all but depleted and replaced with adult haemoglobin (HbA). This is why, in most cases, prior to the first six months of life, babies with sickle cell disease rarely exhibit symptoms of the disorder. HbF suppresses sickling.

Researchers credit Hydroxyurea for the improved life expectancy and the quality of life of people with sickle cell disease. For example, in the United States, the average life expectancy was 14 years in 1973, but it is now topping 50s. The US Food and Drug Authority approved Hydroxyurea for use by adults with sickle cell in 1998. And for the past couple of years, evidence has emerged, confirming its effectiveness in babies and children.

But with its effectiveness and efficacy in Europe and the US, it has not been studied in Uganda or any other malaria-endemic country, not even Nigeria where it has been used for a longer time. I hope this clinical trial is going to help us discover the good and bad of the drug in sub-Saharan Africa. With evidence from a number of people I have interacted with, the drug has had both positive and negative effects.

In June this year, on one of Sickle Cell Network Uganda’s community awareness outreaches in Bamunanika in Luweero, we met a 23-year-old woman who became paralysed after taking Hydroxyurea. She stopped talking and became mentally ill. She had only started to recover when her parents stopped giving her Hydroxyurea. But even then, her talking was uncoordinated.

So, despite its applicability, Hydroxyurea does not work for everyone. David Nathan of Dana Farber Cancer Institute, USA, says that Hydroxyurea works in only 50 per cent of patients. Similarly, for obscure reasons, Hydroxyurea does not address every sickle cell complication. In the same vein, although higher HbF levels are associated with less frequent acute pain episodes and reduced disease severity, they seem to have a weak impact on priapism, stroke, pulmonary hypertension and blood vessel complications.

Professor Graham Serjeant, a sickle cell specialist, argues that although many doctors say Hydroxyurea has changed the lives of many patients, some do not respond at all. He says there are toxic effects and “we don’t know about long term dangers”.

Therefore, we should take note that Hydroxyurea is not a cure drug for sickle cell disease. I urge those who are carrying out the trial to provide full information, including the benefits and likely side effects, to help participants make informed decisions. It should also be important to follow up on those people who have used Hydroxyurea before