May is World Lupus Awareness Month

I originally wrote this note in May 2016. A lot has changed since then, most notably my diagnosis, prognosis and my work with She Blossoms.

The first time I heard about Lupus, was when a doctor mentioned it in passing after he’d ordered some tests and they’d come back positive for anti-Double Stranded DNA. I’d been through a harrowing chest infection followed by a kidney infection. With my history of severe allergies and migraines, the doctor must have decided to give it a check. But he didn’t discuss his suspicions with me, and even when the test results came back indicating autoimmune disease, he somewhat dismissed it, and so did I.

That was in 2009.

I’m a writer. I love to research. So yes, I did research Lupus. But the combination of the very scary descriptions and the indications on prognosis made me dismiss Lupus even more. Like my cats, I went with, if I can’t see it, it isn’t there.

But it was there. I Went through a period when the symptoms were there but I could cope, go to work, see people, do things 🙂

In 2012, I went through a stressful period when my adrenal system started to act up. The symptoms abated, and came back a few times. I was in the care of an endocrinologist at the time. Sometimes it got so bad I doubted my sanity, even saw a psychiatrist who treated me with mood stabilizers for a while before recommending strongly that I see a rheumatologist.

I was still not in treatment for Lupus. I kept going, trying to live my life, do my job, love my people. My symptoms were treated when they got too crazy.

Finally, yet another doctor saw me in an emergency at St. Mulumba’s Hospital in Thika. I was in adrenal crisis, severely inflamed, nearly blind, in unbelievable pain. That led to the buckle down when I definitely had to see a rheumatologist. By then, I had also developed Cushing’s Syndrome, Left Ventricular Dysfunction with arrhythmia, Glucose Intolerance, hypothyroidism, indications of Metabolic Disease and Polycystic Ovarian disease.

The last one year has been a journey of pain, fear, and strangely beauty and empowerment once I overcame the fear from the diagnosis.

At one point I was incredibly furious at a doctor who felt that I needed to ‘understand’ that I really had less than a year to live and to make my peace with it. I walked around feeling angry at ‘the doctor’, and even a second opinion discounting that first prognosis didn’t help fix my anger.

In a way, that anger sort of tripped me into the next phase. It looks like denial, but I decided to take charge of my life. I changed my diet with the aim of reducing inflammation,  started physiotherapy, which was hell at first, pushed myself into a regular exercise routine, made the decision to be consciously optimistic.

I have to live with Lupus. But I’ve made a decision to live with it on my terms. My terms are simple. Nothing will come between me and the beauty of life and love.

So what is Lupus?
Lupus Facts:

1: Lupus is an autoimmune disease. Your body’s immune system attacks cells, tissue and organs as if they are a virus, bacteria or foreign body. Please see the list of symptoms here. There are about 200,000 cases of Lupus in Kenya. Many might be going undiagnosed.

2: It takes several doctors visits and more than a few tests to get a Lupus diagnosis. Lupus is the great imitator of other illnesses. Those must first be ruled out to finally get a Lupus diagnosis. There is no single blood test to diagnose Lupus. A doctor must assess your symptoms and run several blood tests.

3: Although you might need to see other doctors, a rheumatologist is best suited to help you diagnose and manage Lupus. There are only 8 rheumatologists in Kenya, as of last fact check on April 23, 2016.

4: People living with Lupus experience periods of disease intensity (flares) and disease inactivity (remission). During disease intensity, the cost of medical care exceeds KES 1 million on lower end and can rise up to KES 8 million and above per annum.

5: Insurance companies shy away from insuring lupus patients or charge very high premiums because of high risk factor.

6: Many Lupus patients suffer much more severe illnesses and episodes because they delay getting treatment until they have the cash.

7: Dealing with Lupus is trying to understand the complexity & mystery of Lupus, & trying to keep up with that paradox.

8: 3 broad categories –

Discoid – Chronic Cutaneous Lupus Erymathotus

Systemic Lupus Erymathotus (SLE)

Drug induced Systemic Lupus

9: No two cases of Lupus are similar, even when they fall under the same category.

10: It often helps to meet with and talk to other people going through the Lupus journey. The Lupus Foundation of Kenya runs a support group that brings patients together, and organizes a resource program for finding doctors who understand Lupus. I have found strength and support and I hope that I have provided support in some way to others who need it through this group.

The Lupus Foundation of Kenya will hold an event dubbed The Butterfly Effect on 6th of May 2017 to observe World Lupus Day as well as provide an opportunity for a meet and greet for members, supporters and friends. It should be an awesome learning opportunity for all. YOU are invited!

The entire month of May is going to be a month of activity for She Blossoms, the channel I’ve chosen to use for my health activism. Along with my team of She Blossoms volunteers and my partners in crime, Anne Eboso of All4Cars International and Kibali Muriithi of Lahani, we are working on a calendar of events which will be announced on Sheblossoms.co.ke.

 

‘As Received’. Can We Do Better?

Are we a nation of blind and irresponsible ‘forwards’ or can we do better?

With Facebook & Twitter, and now WhatsApp Groups, this horrible trend of sharing information that comes to us without verifying the source or the veracity of the information has increased exponentially.  We end the forward with ‘As received’, as if that absolves us of any responsibility. Does it?

Ridiculous rumours, harmful gossip, personal information, fake news, and just plain stupid lies get peddled around in forwards that don’t see an end. ‘Type Amen’.

But perhaps the most harmful of these, are well intentioned posts about cancer, developmental disorders and mental health issues that are pushed around and then people are asked to share on their status as ‘awareness’.

In the last few months, one such post attempts to shame a person who is considering suicide. The post talks about the possible effect of this person’s suicide on everyone else in their life, including that bully, and the teacher who was hard on him. In essence, the post tells the depressed person that ‘Suicide is Selfish’.

I suppose there may be several versions of this post. The bottom line of it is that it never once addresses the depressed person’s pain, but instead attempts to shame them into not committing suicide.

One thing is absolutely obvious, the person who wrote it has NO understanding of depression or suicide. They have no comprehension of mental illness, otherwise, they would not attempt to use such a triggering piece of prose to ‘raise awareness’ or ‘stop suicide’.

I tried to find the words to deal with the shaming part of the ‘Suicide is Selfish’ post, but I think Chris Lyimo’s words are a lot more organised than my thoughts.

I’m concerned about that suicide awareness post doing the rounds in this FB hood.

If a suicidal person was to read that post, I can promise you, it would just drive them deeper into the depression (a mental health, and not a moral, issue), make them feel more guilty and ashamed of the impact that their miserable state may have on everyone else. The irrationality that accompanies depression would just hasten the suicide route.

They don’t want to end their lives; it’s the pain, people. It’s the pain that they can’t stand.

They have gone beyond the instinct of self-preservation.

Help them!

#Suicideisnotachoice
#healingispossible

~ Chris Lyimo

Anyone who shares the ‘Suicide is Selfiah’ displays the same amount of ignorance, or callousness as the person who wrote it.

I call it callousness because basic common sense could tell you that a person crippled with depression needs compassion and support, not shaming and more bullying.

I just saw a person on a conversation discussing this type of post say that she shared the post for ‘dialogue’. This absolves her of responsibility for any harm the post might cause because she shared the post to start up a conversation on depression and suicide. Really?

In what universe, does it make sense to use harmful material to do good?

This brings me back to all those pieces of fake news, rumours, graphic videos etcetera that we share ‘as received’ without verifying, and then imagine that we do not have any responsibility when those posts cause harm.

Why would you share something that could potentially hurt someone who you count as a friend, just so other friends can ‘dialogue’ about it? What makes you think you have no ethical responsibility with regards to information you forward ‘as received’, if it will reach an audience who will react solely on that piece of information, with positive or negative results?

We are in an election year, so I can only expect more of these. Propaganda, fake news designed to propagate ideology, fan tribal hate, generate physical violence… Do you really think you will escape responsibility because you did not design the material and simply forwarded it ‘As Received’?

There might not be any consequences directed at you for sharing ‘as received’, but there will definitely be consequences somewhere along the line. Who is responsible?

Are we a nation of irresponsible forwarders, or can we do better? Do we have ethical and moral responsibility with regards to the information we share on our social media accounts?

Loving Someone who Lives with Lupus – #LupusLife 

A few weeks ago, Fred asked me, ‘How easy is it to be your friend?’ I laughed and told him, ‘You tell me.’

Being a friend to someone living with #Lupus has got to be the most frustrating situation ever. You have to expect canceled plans because of sudden illness. You have to expect sudden illness when you are up and about probably having fun. You have to know what your friend suffers from, what meds they take, how to react if they get I’ll suddenly. You are not just a partner for fun times, you are a support system and sometimes a care giver. That is such a burden to carry!

A few years ago, I was part of a merry band that I considered my friends. When Lupus reared its head, I went through the usual motions of a Lupus flare. You wish it away. You feel guilt and shame. You try to push through it. And then you fail and collapse. Then you get up and try again. I struggled to stay afloat. Sadly, my merry band did not have the capacity to comprehend what had assailed me.

We went through fights because of canceled appointments, to accusations of being a hypochondriac, lazy, suffering from Münchhausen by Google, and so on. When I am in pain I am not the best communicator. I either shut down or explode in acidic words. That didn’t help much. So in the end, I lost my merry band of not so real friends. Or rather, I cut them off to end the reign of negative energy.

Fast forward 3/4 years and I’ve had the beautiful chance to experience the exact opposite of that situation.

Loving someone who lives with Lupus means that you empathise with their pain, you worry about their prognosis, you become as much of a warrior as they are.

In the last few months, I’ve watched my friends quietly organise and reorganise plans so that I am not exposed to direct sunlight, so I don’t have to walk too far, so I have water, meals on time so I can take my meds on time too. They understand why I am safer with companion in the event I have a seizure, why getting into a matatu is about as dangerous to me as coming into contact with vials of live viruses for a person with a healthy immune system. These little complications and inconveniences…

The truest of my friends know that in itself Lupus is part of my identity now, and that the illness doesn’t make me less of a person, only more; more ambitious, more determined, more resilient, more hopeful…

Living with Lupus has made me accept one fact. There are not very many people who are willing to take on the role of friend to a person living with Lupus. It is a tough job. It is an incredibly tough job. I would not fault anyone for choosing to walk away. 

And I am so incredibly in awe of those who choose to stay.

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#LupusLife #LupusAwareness

Because Lupus adds Spice to my Life

“Lupus changes People. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.”

When we sat down to plan the year at She Blossoms, we decided that 2017 was the year of Hope, so all our events are Hope events. But a secondary theme for this coming Sunday’s concert is ‘Lupies are People’.

It is probably something you have not thought much about. When you hear of cancer, diabetes, heart disease, Lupus, you don’t think of it in terms of people unless and until it touches someone in your family, someone you love, You. Then it stops being some scary monster that lives on the street that you have to evade but have never faced.

Now the thing with Lupus is that in most people, diagnosis doesn’t spell terminal illness. With care and management, most people living with Lupus can live long lives. However, living long lives doesn’t mean that they do not suffer the effects of the fact that they have an autoimmune disease, that basically, they’ve got a part of themselves hellbent on waging war on their bodies.

A person living with lupus will always have to avoid sunlight and UV ray emitting light sources. They will have to use sunscreen, umbrellas and hats. A person living with Lupus will have to avoid certain foods that overstimulate the immune system. Also, as long as they are on medication, a person living with Lupus will have to avoid exposure to possible infection sources. They would have to avoid exhausting themselves, excessive stress, overindulgence in alcohol as all these can trigger Lupus flares. They would have to have several medical examinations and laboratory tests a year in order to monitor their state and catch changes as neglected flares can result in severe illness and or organ failure.

Now, to cope with all of this, and yet continue living life, loving friends and family, working at a career, that is the challenge. Being sick is easy compared to the challenge of living life.

I am awed at Lupies who embrace life with everything they have; raising families, working hard, at life and play, in spite of the storms they have to weather because of Lupus. These are the people I want to celebrate.

Moms. Dads. Awesome Daughters and Sons. Wives. Husbands. Girlfriends. Boyfriends. Doctors. Artists. Writers. Accountants. Lawyers. Administrators. Business Persons. I have met so many and they don’t seem to think that Lupus should stop them from being the best.

I observed the other day, that in spite of the sentence we all receive on the day we are diagnosed, that Lupus is a lifelong chronic illness, many of the people I know who live with Lupus do not consider themselves sick unless they are on a hospital bed hooked up to an IV. Everything else is normal Lupus Life. In fact, it would usually take a lot of pain and discomfort, possibly a near death situation for a Lupies to go to hospital. The doctors scold us, but its the truth.

Someone commented that all the Lupies he has ever met are always smiling like they are having a good time. He was saying this to me while I was hooked up to a bag of antibiotic IV. I think he was more than a little miffed when he asked: What is it? What makes you so happy? Why?

I wanted to garner some higher level response but I was too drugged up, so I said.

Because Lupus adds spice to my life.

I hope you will come through this weekend, because you will get to meet and hear from a few people Living with Lupus. You’ll get to hear from them how Lupus has changed them, made them stronger, made them better.

Advance tickets will be available till Friday 5pm via Mpesa 0725758389. Tickets will cost 500/- at the door.

She Blossoms for Lupus – A Concert for Hope will be held at Shalom House, Daniel Comboni Rd, Off Dagoretti Karen Road on Sunday 5th March at 3pm to 7pm.

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The concert is curated by Lahani’s Kibali Muriithi and sponsored by All for Cars International.

See you there!

I’m Accepting Gifts! Done with #LupusChemo – The Lupus Life

Yes, I’m done with a six month journey with #LupusChemo.

I still don’t know what this means. My immediate future holds a lot of medical review in the form of lab tests and examinations, which means I’m heading back to India.

The last time I did my blood tests here in Nairobi, only a month ago, most of my levels showed reason for hope. There has been some concern with my erythro-sedimentation rates and some protein in my urine which could be as a result of the chemo or not. The doctor’s recommendations are to not panic at this moment.

I’m looking at my future with hope, whatever it does bring to me.

I went back to work in December. I did make a promise that I was going to go back to working as a literacy advocate. I got to work on a campaign to raise funds for a Library under the Start a Library program.

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As of January 2017, I am working on the Storymoja Festival team as the Communications Liaison. I am very excited about being part of the team growing the program for the 2017 Storymoja Festival which will be on 27th September to 1st October. The theme for this year is ‘Black Peace’, which I see having so many possibilities.

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I’m also so happy to be part of the She Blossoms Lupus Awareness programs. We inducted the 2017 Volunteers which involved several rounds of training, which was both enjoyable and exhausting for me. I’m happy with the new team!

Our first event of the year; She Blossoms for Lupus, will be this weekend, on March 5th 2017 at Shalom House Gardens. It is a Concert of Hope, curated by Lahani’s Kibali Muriithi. Performing at the event will be Jemedari, Ach13ng, Serro, Ayrosh and Kibali. I hope to see you there!

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The Plan – Lupus Life

Are you one of those people who has always had a blueprint of your life? Always known that after school, you’d go to Uni, then get a job, find the one and get married, have a bunch of mini-mes and watch them grow beautifully to adulthood, and then retire with the love of your life to the countryside in opulence? Or maybe after the kids grew up, you and the love of your life would go travel the world and fill out your bucket list?

I have never had a solid plan for my life!

As far back as I can remember, my life has been about putting one foot in front of the other, getting to tomorrow. It’s always been about surviving today.

I was born a sick child. My current doctor thinks I may have had Neo-Natal and Childhood Lupus. Lupus is an autoimmune disease, in which the immune system goes rogue and attacks cells, tissue and organs as if they were infections or foreign bodies. I was not diagnosed while I was a child, but the symptoms seem to fit in.

I spent the first 10 years of my life in and out of hospital, with so many disruptions to my childhood schedule. Because of this, I basically never fit in with my schoolmates, or potential playmates my age.  I learnt to occupy myself by reading everything I could get my hands on. My mother indulged me and provided all the books I could ever have wanted.

My situation as the little sickly child often left behind made me so very vulnerable. An abuser was quick to identify me as a victim. He worked his web around me, isolating me even further from children my age, and from my own mother, and doing it so cleverly in the name of God. He pretended to be helping me and my mum, who was a single mum working long hours to provide for her children.

When I was 12, I found the courage to tell my Mum, and Mum defied so many incredible odds to make sure that man was put behind bars. It was something he never thought would happen when he said, ‘No one would believe you.’

Those 4 years of being sexually molested by a monster hiding behind God left me scarred emotionally. But soon after that man was jailed, my illness seemed to lift.

I became a very active teen. I was dealing with depression and anxiety, for which my mother did everything she could to get me mental health support, but physically, I was at my best.

‘Juliet, slow down!’ I must have heard this so many times from my mother, my teachers, and other authority figures. I moved like a storm. I took on too many things. I lived like I was making up for lost time, or living on a deadline. I think it was both. But behind it all, I was very depressed, very anxious.

When I turned 19, the shroud of illness came back. At first, it was just severe migraines that lasted days. They only came about once a month. Mostly, they danced around my menstrual cycle. Once in a while, one would hit me after an emotional upset. Unfortunately, the late teens are prime time for emotional upsets.

I should have gotten used to my life not following any kind of plan. I completed high school at 16 years of age. This was partly due to my childhood illness. I spent so much time confined to a bed, so my mother occupied me with lessons. When I went back to school, I’d be far ahead of my classmates, so a few times the decision was made to let me move to the next class so I wouldn’t be too bored.

After sitting my KCSE exams, however, I found I had to wait two years to enter a public university. This was standard practice countrywide for all high school matriculants. But my age and the lack of an identity card which is issued at age 18, also played a part.

At the time, this did not bother me much. I filled my life with sports, volunteer work and part time jobs around my home town, Mtwapa. I loved working with kids, and my mum had several friends with young kids, so it wasn’t too hard for me to be paid to watch out for the kids on a few afternoons or over a weekend while the parents worked or went away.

But then I turned 18, and unfortunately found I couldn’t join university. This time, it was because there was just no money. My family’s financial situation had changed drastically. This hit me a lot harder than I expected.

In the year, it took me to turn 19, I also lost my brother in a violent shooting incident. That, in itself, was enough to floor me emotionally.

In spite of it all, I kept moving, one foot in front of the other. I needed to survive.  So, I did.

I never went to University, but I did get an education, an unconventional one, a lot like my life. I put together 2 years’ worth of coursework in Early Childhood Education – which is what I wanted to follow as a career – and some Creative Writing course work. I studied Publishing Procedures, and put in some course work into Communications and then later, Human Resource Management. Through the 12 years it took me to gather up all of these, I also worked, sometimes as a volunteer, and later as a paid employee.

I worked through as a crèche assistant, and later as a teacher assistant in a Kindergarten. I stopped working with babies and toddlers because I found that my immune system just could not cope with being around babies.  I volunteered for a term teaching English and Literature at a chartered school, then in the same year I started my internship as a writer / editor at a publishing firm. Much later, I made the decision to switch jobs and explored the communications field while working for a literary festival.

Through all of this, I suffered. I suffered migraines, severe fatigue, joint pains, severe anxiety and depression. But I functioned. I functioned through it all.

I was diagnosed with Systemic Lupus Erythematosus when I was 27. At the time the symptoms were mild, in my opinion. I think this is why it was so easy for me to dismiss the diagnosis and make an attempt at continuing to function. One foot in front of the other.

I didn’t really have a plan, except to survive.

I think this fact, my not having a particular plan for my life, contributed a lot to how things worked out with a lot of things in my life, my friendships, my relationships.

On the one hand, I felt this urgency, like I was on a timetable. There were so many things I wanted to do. Sometimes, those things were more than my body could take. But after all that blitzing, I was not really going anywhere.

I didn’t want to build a business empire. I wasn’t very sure about marrying ‘the one’ and setting up a life in a nice little fenced compound I couldn’t escape from. If anything, my day dreams only floated as far as writing a bunch of young adult novels and maybe a volunteer job working with children in some capacity.

This was such a disappointment to certain persons who expected more from me. My only goal in life was to survive the day.

And I did survive, right up until the day my heart couldn’t take it anymore. A heart attack is what stopped me and right there, while clutching at my chest, watching the lights fade away, I knew what my plan was.

I want to live.

I want to live with everything I’ve got. I want to love with all my heart. I want to sing, and dance, and try out new flavours of ice-cream, and figure out what it is about flowers that makes me smile.

I don’t want to live in fear any more. I’ve chosen to believe that I can overcome my worst fears if I try. And I do. I will not carry grudges in my heart anymore. I forgive. And I forget. I may not let repeat offenders into my life again, but I will not carry grudges.

Most importantly, I will forgive myself. I forgive myself for the times I was not as strong, as smart, as decisive and as determined as I think I should have. I forgive myself for the times when I have been human; prone to anger, jealousy, fear or apathy.

I will give of myself, to send positive ripple effects to those who need it, through sharing my hope and faith, through small kindnesses, through spreading Lupus Awareness, and through working as a literacy advocate.

I’m figuring out so many things yet. I have a lot to learn about life, love, hope, courage and defying odds. This means going out of my comfort zone. I find that the more I dare, the easier it becomes. So I’ll keep daring, and living and loving.

That’s the plan.

Calling Out for a Good Cause – Start a Library for Rabai Road Primary School 

I wonder if I should do a 2016 highlights post. I did one for She Blossoms at which point I realised just how much She Blossoms had grown and how much it was no longer about me. 

I’ve grown too. One sign of that is my ability to care about several different things without going completely crazy. If you know me, you know how much I care about literature, literacy, and lupus awareness. 

I must admit though that in the last few weeks I’ve felt my heart break a little bit because of one of those. In late November, Start a Library asked me to support a campaign to raise funds for libraries. Now, Start a Library is an engine that fights the literacy crisis in Kenya by starting libraries in schools and training teachers and students to run reading for pleasure programs. If at this point you are wondering ‘What Literacy Crisis? ‘ please take some time and watch this video: https://youtu.be/cifn06aQ1oY

Now the child in that video is a real child, with real dreams and real hopes, but if at that age, in that level of schooling, she still cannot read material meant for children 5 years below her, what will happen to her? In just one year, she will be expected to sit down and answer questions in an examination written in a language she barely understands, let alone reads. 

The problem is that this is not an isolated case. You can’t mark these children as outliers, say for example that they suffer learning difficulties. If in fact a child in the Kenyan education system has learning difficulties and is not visually or hearing challenged, then that child is more than likely doomed. In the latter case, there’s a chance they might get help in a special school. But that isn’t to say their situation is any better. 

In a country where we are so used to things being broken, we need to start learning how to fix them ourselves. This is Start a Library’s vision. In many instances, Start a Library works with local communities to find solutions to the literacy crisis. In Makueni County, Start a Library partnered with the County government and the First Lady in raising funds, training teachers and students on library maintenance and on reading programs and in setting up monitoring and evaluation systems. This was a huge undertaking as 30 libraries were launched in one day on 29th November 2016.

Meanwhile, here in Nairobi, 3 schools are in dire need of Libraries. Rabai Road Primary School, Muranga Road Primary School and Arya Primary School. No child, and no school should be left behind. 

It costs approximately 750,000/- to set up a library – books, training and monitoring. When I was asked to help the campaign this is roughly the amount we wanted to raise times 3 for the 3 schools. 

I’d like to thank everyone who has responded to my whatsapp broadcasts, private messages, texts, tweets, call-outs, it means so much to me to see your names on the lists of donators and know that you care about literacy as much as I do. Thank you. 

But I’m here again because I need your help. I want to get that library into Rabai Road Primary School in January. I’m pretty certain that we can do it, if we work together. 

If you haven’t donated yet, please look into your pocket and see if there’s a ka-hundred or a ka-thau and Mpesa it to Paybill 202211, Acc Startalibrary. 

I know loads of my friends have stretched out and donated not just to this but also to other causes I’ve sent your way and it means a lot that you do. If however, you feel sufficiently philanthropic, and there’s an extra five hundred somewhere, please help me get this Library to this school. Thank you so much! 

This is our world, and some movements might seem like bleeding heart options, but I truly believe that we change the world one life at a time. 

Your heave and push will help, and if you know someone/persons who can support this in a larger way send them this way. My email is juliet@storymojaafrica.co.ke in case you/they would like more information about the Start a Library Program or about the Schools. 

To support now, simply follow the instructions in the image below. 

Donate by Mpesa Paybill 202211; Account Start a Library. To donate by card or PayPal, visit yetu.org/startalibrary

To see about the 101 Libraries already installed by Start a Library, visit startalibrary.org.