My favorite gadget is my Samsung mobile phone!
It is not the most sophisticated or glamorous of the Samsung series but it is my main connection to the communities living with sickle cell disease who I reach out to. Before I got the idea to set up a 24hour call Center, many caretakers of people living with sickle cell disease in my community relied on "technical know who" (a grape vine way of getting connected to a service by asking whoever is next to you so they can refer you to someone who knows a person) to find a doctor on call or to find a readily available counselor or even means of transport to the closest health facility in case of an emergency.
The grapevine may be a source of information but mostly unreliable because a word lost in translation or if founded on untruth can lead to unprecedented confusion.
When my son was a lot younger, I struggled to know the triggers for the painful crises he went through periodically. I observed though that they mostly happened at night or when the weather was extremely cold or hot. At times he complained of his stomach hurting to mean his chest - generally a lot of attention was required to establish what the crisis was and whether / when/ how to rush to hospital. I did not own a car but i had befriended a number of cab owners who i could call at any time of the day to help. I knew bikers for hire as well so I had a number of people driving to my door at all hours of the day (and night) but it worked just fine. Sickle cell attacks are usually coupled with intense pain and uncontrollable crying especially in younger patients. One of my neighbors observed that the child in my care (I was underweight and mostly stressed juggling a job and learning how to cope as a single mom so she assumed i wasn't the mother).
She also noticed that there was a regular trail of automobiles that came to my house at all times and she always heard the child cry like they were being hurt. She went ahead to conclude that it was un-neighbourly of me to always keep to myself, a simple hello and i am off inside my house or out of the compound. I stayed with one of my siblings and a house help, generally keeping to our selves. This lady concluded that we may be abusing a child or doing some shady activities and decided to consult the landlord with whom they agreed that it is only logical to involve the police.
So one day I return from work to find a police pick up outside our gate, I was lost in my own thoughts when i saw said neighbour who right away pointed me out to one of the police ladies who walked to me and insisted that i was being arrested for suspected child abuse. I was taken to the police station where it took an awful lot of back and forth questions and explanations and calling my son's pediatrician who came right away and friends and family to resolve the situation. At the end of it all I was hurt, cried hoarse, humiliated - I felt overwhelmed. I had been in this neighborhood for four months - it was convenient: Close to a health center, accessible by road, secure, affordable, it was easy to reach my workplace and so forth. Now I had to go back and face my neighbors and landlord! I was angry and hurt but one of my elderly aunts advised me to go talk to them face to face. I wanted to know why these concerned members of the community had not thought to come to me first. However it made me realise how sometimes our concerns and emotions overshadow our ability to effectively communicate to the people around us or even the workplace. It is possible that a business has closed down as a result of miscommunication.
Leaning on my aunt for support we managed to get an apology from my neighbour and landlord. When I left the police station I had resolved to move house - I was so hurt; but after talking to them I realise that i needed to forgive them for this honest mistake and give them opportunity to learn. For the rest of my stay in that neighbourhood I knew i could lean on them to give me help whenever I needed it.
Today when I counsel people i never forget to educate them on the importance of effective communication. Not everyone knows about sickle cell so if we are to do away with stigma; it is our responsibility as a community affected by this disorder to effectively share what we are going through. Communication does not have to come through the grapevine - we now have at disposal; the telecoms, internet and all sorts of gadgets to put information across.