Lupus and Motherhood – Ask a Question about Lupus (#LupusAwarenessMonth)

90% of persons living with Lupus are women. It is not surprising then that the question of pregnancy and motherhood while living with Lupus would come up. so often!

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I’m not a mum yet, but I look forward to the experience when the time is right. Because of certain physical challenges as a result of Lupus, I’ve always sectioned motherhood with possible fostering or adoption. However, I figured since the question of lupus pregnancy and childbirth  had come up a few times on here, I’d do some research and talk to a few moms while I was at it. This is the result of some reading and a week long conversation with a doctor, an obstetrician, a lupus mum and a normal mum.

You will notice that at this point, my initiation of the conversation is somewhat clinical. That’s the point I am at. I need your opinions and experiences to make this conversation more human for everyone. So please, join in in the comments section. Asante Sana!

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Pregnancy and motherhood are natural processes that can be both rewarding and challenging. A lot of women, not all, look forward to and enjoy the journey of motherhood. Some struggle with getting pregnant, others struggle with being pregnant, and a few struggle with being moms. Some have it easy, some don’t.
The same rules apply to motherhood while living with Lupus, with a few added risks and challenges.

Before you even conceive, you might  be wondering if there’s a chance you might pass on Lupus to your child. The answer is no. It is true that there is a genetic component to Lupus, meaning that you and your child’s genetic make up may be similar enough as to make you both susceptible to Lupus. However, there is not one specific lupus gene that you can pass on to your child.

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It is possible that you might not be able to conceive at all,  if your reproductive and endocrinology all systems are too adversely affected such as in the case of secondary polycystic ovarian syndrome and early menopause onset.

Conception and maintaining a pregnancy through the full gestational period might be harder depending on disease activity and the parts of your body affected. You should ideally have an honest conversation with your doctor and then chart out an action map.

Assuming that you can conceive, you will need to be aware that a lupus pregnancy has the potential to be a higher risk pregnancy due to the immunological aspects as well as due to organs affected i.e. In the case of kidney, cardiovascular or CNS dysfunction.

You will need to be in the care of your regular rheumatologist, as well as that of an obstetrician who specializes in high risk pregnancies and births.

Generally, doctors have found that, and this is more so for people living with Lupus, planned pregnancies have better outcomes. Planning your pregnancy around less stressful financial and career periods can help make things easier for mom. For Lupus moms, planning your pregnancy so conception happens at a time when the disease is not active or less active is a good idea.

You will need to stop taking certain medications for Lupus, if you are planning to conceive. There will be some medications your doctor may advise you to continue taking to continue managing your Lupus. Please consult with your doctors before taking ANY prenatal dietary supplements.

Once your pregnancy is confirmed, your doctors will check for

– Urinalysis – to check for protein in the urine

– Complete blood count

– Blood chemistry tests – to look at kidney and liver function

– Antiphospholipid antibodies – to check for risk of miscarriage

– Anti-SSA/Ro and Anti-SSB/La antibodies – to see if the fetus has a risk of heart block (neonatal lupus), in which case the doctor will request a fetal echocardiogram starting at 18 weeks

– Anti-DNA antibodies

– Complement levels

As with all other pregnancies and birth, things can go wrong. Knowing what can go wrong for the process involving a Lupus mum, should really not frighten you, but empower you so that you can make the right choices, and once you are pregnant be educated enough to note warning signs and get help for yourself and baby in time. So here’s a list of possible complications in lupus pregnancies:

Preeclampsia: this is when there’s a problem with placenta. If mum’s immune system experiences a sudden change, preeclampsia can develop in a lupus mum. Symptoms would be sudden increase in blood pressure, severe headaches and blurred vision. There might be protein in urine. This is a serious condition that requires immediate medical care to save mum and baby.

HELLP Syndrome: Hemolysis, Elevated Liver Enzymes & Low Platelets. Although HELLP usually develops before the pregnancy is 37 weeks along, it may develop in the week after the infant is born. It has a higher risk of occurring in women with preeclampsia and eclampsia.

Antiphospholipid Antibodies: These can cause problems with clotting of the blood.  If you have antiphospholipid antibodies, you may need to have an early delivery.

IntraUterine Growth Restriction: Slow Fetal Growth can occur because of lupus complications.

Impaired Kidney Function: due to active lupus, excess protein can spill into the urine (proteinuria), causing swelling (edema) in the feet, ankles, and legs.

Lupus Flares: increase in autoimmune activity with pronounced joint pains, fevers, rashes and organ dysfunction.

Preterm delivery:  the chance of giving birth before 37 weeks does appear to be more frequent in women with lupus than in otherwise healthy women. Women with lupus are always encouraged to arrange for their baby’s delivery at a hospital with a neonatal intensive care unit (NICU).

Fetal Loss: Loss of the fetus can occur in any pregnancy; however, spontaneous miscarriages and stillbirths are more frequent in women with lupus. The two greatest risk factors are a history of previous fetal loss and high levels of antiphospholipid antibodies. The risk of fetal loss also may be increased if: Lupus nephritis is active at conception; there is evidence of proteinuria, antiphospholipid antibodies, lupus anticoagulant, or hypertension; or the serum creatinine level is high.

Neonatal Lupus: Neonatal lupus is not true lupus; it is a rare condition associated with anti-SSA/Ro and/or anti-SSB/La antibodies from the mother acting upon the fetus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after six months with no lasting effects. The most serious symptom is congenital heart block, which causes a slow heartbeat. This is usually detected when the fetus is between 18 and 24 weeks old, and most infants eventually need a pacemaker.

If a mother has had one baby with neonatal lupus, there is an 18 percent chance that she will have another child with the same problem. The chance that the baby born with neonatal lupus will develop any form of lupus later in life, however, is very, very low.
Supplementary Information sourced from Lupus Foundation of America: Lupus.org

Beyond Pregnancy

Once you’ve passed the pregnancy stage, you will now have to juggle obligations and responsibilities of motherhood with the challenges of living with Lupus.

Important goals are to keep disease activity to a minimum and avoiding lupus flare triggers. So keep up with your body, be regular with your meds and doctors appointments, eat healthy, sleep enough, exercise regularly, avoid direct sunlight and uv rays, hydrate and so on.

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Useful tips for lupus mums:

Build a healthy support system. Have a few friends and family that you know you can absolutely count on in case of child care emergency.

If you can afford it, hire reliable child care and house work support.

Be organized. Motherhood is in itself a learn-on-the-go, get-surprised-a-lot kind of job. Having a measure of Organisation to your routine helps you anticipate challenges so you can have a lot more time and space to enjoy motherhood which translates to taking better care of your family.

If you have a parenting partner, honestly and constructively discuss possible challenges and work out together what to do in the event one comes up.

Ask for help when you need it. Learn to delegate and relinquish control of some situations, so that you’ll have enough time to rest and rejuvenate.

Are you a Lupus Mum? What other tips can you share with new and potential mums living with Lupus? Do you have tips that would especially be more useful to Lupus mums in Kenya? Please share! Sharing is caring!

P.S. It might be that after evaluating potential risks you chose not to go through pregnancy. That is a valid and very personal choice. 

You might choose to either focus on keeping your lupus life in balance. You might decide to do so while pursuing motherhood through surrogacy or adoption. Those too are valid choices. Remember, though, that you can only succeed in doing both by being aware of all risks and all options. So Know Lupus, Learn You!

Want to engage more with She Blossoms and Lupus Awareness related events, follow us on Facebook (She Blossoms) and on Twitter @Sheblossoms. The Lupus Foundation of Kenya runs a monthly support group in Nairobi. Contact them on Facebook or Twitter to join their update list.

Photos from Put on Purple for Lupus Walk – #POPKenya #LupusAwarenessMonth

The #Sheblossoms team and The Lupus Foundation of Kenya wishes to thank KWS Education department for their assistance before and during the POP PARADE for Lupus event at KWS Safari Walk.

We had loads of fun, gained great insights and some teary moments, but we went home feeling braver with more hope for our journeys with Lupus.

Enjoy the photos on the She Blossoms page and The Lupus Foundation of Kenya.

What is Lupus? Put on Purple and Let’s Talk About It! (#LupusAwareness) 

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. 

Join us for POP Out Walk for Lupus

  

Pull out your Purple and join us on May 20 at the POP Out Walk at KWS Nairobi Safari Walk!

Why POP Out? We wear purple to start conversations that inform and remind people about the many living with Lupus, including the 200,000 in Kenya.

Lupus is an autoimmune disease. Want to find out more? Join us – patients, caregivers and supporters – as talk about our journeys, our challenges, our blessings and the in between a. Find out how YOU can help defeat this devastating illness!

KWS Safari Walk on Langata Road, is a beautiful green walk with a variety of wildlife. There is a lot of shade and rest points.

Entry is 250/-

Bring a picnic lunch and a blanket – plenty of grass to sit on at our assembly point.

POP Parade Tshirts will be available for sale at 500/- if you would like to add some purple and keep starting conversations about Lupus.

Programme:

11:00-11:45 Take Good Care of Yourself (Exercise & Nutrition)

11:45-12:30 Nature & Wildlife Walk

12:30-1:30 Lunch break

1:30-2:30 Ideagasm (Honest Discussion about Living with Lupus, Caring for Someone with Lupus, Loving Someone who lives with Lupus)

3.30 – Close of events.

#LupusinKenya

#LupusAwarenessMonth

Help Make Lupus Care an International Priority! – Sign the Petition #lupusawarenessmonth

Lupus is an autoimmune disease that causes inflammation and pain in various parts of the body. Could you or someone you know have Lupus? Use this symptom checker to educate yourself.

There is no boundary to the impact of lupus. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact.
Sign the petition to make Lupus a priority with the World Health Organisation. 

Worldlupusday.org

  

Do you live in Kenya? Would you like assistance in locating a rheumatologist to help you manage your Lupus? Would you like to meet with other patients and learn coping skills to manage your condition? Please contact the Lupus Foundation of Kenya on Facebook or on Twitter @LupusKenya.

In the meantime, do you have any questions about Lupus in Kenya? Or do you have an experience that you think will be useful to fellow Lupus patients and caregivers? Please feel free to share in the comments section of this blog and post!

Finding a cure begins with hope.

Can One type of Lupus develop into another type of Lupus? – #AskaQuestion About Lupus  #LupusAwareness 

As promised, today is #AskaQuestion Tuesday on Sheblossoms. You can leave your questions in the comments section for next week. Connect with me on Twitter @Sheblossoms.

Last week, we answered two main questions. What is Lupus? How do I Know I have Lupus? If you’d like to start there, check out last week’s post

Today, we answer one question sent in by a member of the Sheblossoms Volunteer team.

Remember: Sheblossoms will not recommend a particular regiment of treatment or management. We will simply provide information to help you explore your options and hopefully make better decisions about your care or about how to support your loved one.

1. Can a Person living with one type of Lupus develop another type of Lupus Later? – Julie Muriuki (@mamayaimani)

Yes. 

As discussed last week, there are three main types of Lupus – Systemic Erymathotus (SLE), Discoid (Chronic Cutaneous Lupus) and Drug Induced. These three main types sometimes have sub categorization a which help doctors target the affected systems and give you better care. So you may have heard of Lupus Nephritis for example, which is when your kidneys are compromised by Lupus.

According to the John Hopkins Medicine page on Lupus, the term “chronic cutaneous lupus erythematosus” refers to a specific form of lupus that is limited to the skin. This form of lupus can exist in people who do not have systemic lupus. However, five percent or more of the people with this form of lupus may develop SLE later in life. Three types of skin lupus exist: chronic cutaneous lupus erythematosus (CCLE) (also known as Discoid Lupus Erythematosus [DLE]), subacute cutaneous lupus erythematosus (SCLE), and tumid lupus. A skin biopsy is usually obtained to diagnose skin lupus, and each form possesses its own characteristic lesions and pattern. 

When lupus happens in New born babies and children, the classification receives another addendum, therefore you will often hear of neonatal Lupus and Childhood Lupus.

Figuring out why the answer is yes, to our question above takes us to two other questions.

A. What causes Lupus? Doctors haven’t quite figured out what exactly causes Lupus, but research has pointed to genetic predisposition and environmental factors.

The Lupus Foundation of America (excellent source of information, by the way) says: Many (but not all) scientists believe that lupus develops in response to a combination of factors both inside and outside the body, including hormones, genetics, and environment.

‘No gene or group of genes has been proven to cause lupus. Lupus does, however, appear in certain families, and certain genes have been identified as contributing to the development of lupus, but these associations alone are not enough to cause the disease. This is especially evident with twins who are raised in the same environment and have the same inherited features yet only one develops lupus. Although, when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the disease (25 percent chance for identical twins; 2-3 percent chance for fraternal twins). Lupus can develop in people with no family history of lupus, but there are likely to be other autoimmune diseases in some family members.

Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related to genes they have in common.’
Environmental factors refers to viral or bacterial infections, medications, overexposure to the sun or UltraViolet rays, Injury, emotional stress, even pregnancy and childbirth. When combined with just the right genetic predisposition, these factors can trigger the onset of lupus or a relapse.

B. Is there a cure for Lupus? There is still no cure for Lupus (2016), but there are medication and therapy systems to manage the disease and if possible, keep symptoms away. In addition, some people experience long periods when the disease is not active.

So back to our question, can a person with one type of lupus develo another type of lupus?

Since the disease has some genetic predisposition component, it is possible that one having one type of lupus makes you also vulnerable to another type of lupus.

In addition, some medication, and the fact that during periods of disease flare your immune system is compromised, mean that you are more susceptible to developing complications which can present as another categorization of Lupus.

People who may have suffered neonatal or childhood lupus, may go through a long period of inactivity, then have a disease flare in the years typical for Lupus to trigger (15 -45). It may seem that the lupus is different since symptoms may be different as well as the categorization.

The basis of it is though, that Lupus in its varied forms is an autoimmune disease. An autoimmune disease occurs when your body’s immune system turns against its own cells, tissue and organs as though they were a virus, bacteria or foreign object.

Please feel free to ask more questions in the comments section. We will be happy to answer your questions, and Where appropriate help you get information on doctors and organizations that can assist you.

Know Lupus, Learn You – May is #LupusAwareness Month

I had a mini spa day courtesy of a friend. Nothing super fancy, just a hair cut, massage, mani-pedi, but oh how good it felt! 

After yesterday’s mini spa day, I’m seriously appreciating how far I’ve come with my lupus fitness fight. I’m not there yet, but I’ve come from a distance.

At the height of my lupus flare and Cushing’s Disease in October ’15, I weighed 125kgs, a lot of it water weight. My organs water clogged, my heart failing. 
In addition, my hormones were all over the place because of the damage to my adrenal system. All solutions suggested were drug based. One doc even told my mum I needed end-of-life counseling. 
Walking or exercising unassisted was not even remotely possible. But I started by youtubing bed asanas. Gosh, the pain! 
I paid a physiotherapist who was also a gym instructor with last bit of money I had for a while. Thankful that I live with mum. 
After about a month, mum paid for a gym membership for me. I started with 2 minutes on the treadmill and weight free movements. 
Getting to 15 minutes walking an average 4km/h speed took forever. But my lung capacity improved and I generally felt less pain. 
First time I hobbled a 2km stretch in 30 minutes felt like a miracle. Now I walk 3.6km in 30mins & run for intervals of up to minute. 
I added resistance, weights, dance aerobics & yoga to my week. Every session is painful. Afterwards, I feel stronger, have less pain. 
I Still have #Lupus, Cushing’s, Heart Failure & a few disorders in between. But I think fighting for fitness has improved prognosis.
My way works for me. My fitness / survival route cannot work for every other #lupus fighter. Know Lupus, Learn You.

#lupusawareness
P.S: You can take part in my Ask a Question Tuesday. Also look out for announcements on things that Sheblossoms and Friends will be doing for #LupusAwareness in Nairobi.

If you need help finding a Lupus Doctor, Support Group and the like, please feel free to check out Lupus Foundation of Kenya. You can contact them on Facebook and Twitter as well.

What is Lupus? Ask A Question Tuesday – #LupusAwarenessMonth

Hello Friends,

May is Lupus Awareness Month. This May, the Lupus Foundation of Kenya has planned a series of events and projects to help relate awareness and provide information on Lupus for those who need it. I thought we’d start the information campaign a little earlier on here.

We all agree that a part of finding solutions is getting information. After the very successful She Blossoms Lupus Awareness Day, I have decided to commit more of my time helping others get information about Lupus. One of the ways I can do this is by consulting with lupus fighters, their families, doctors, health care givers, insurance providers and so on.

I’ll start us off with 2 questions and answers. You can add more questions in the comments section of this note and we can start looking for answers. Simpler answers will be provided responses immediately. But if anything needs further research, my team and I will put effort on it and post a longer note – with expert opinions – next Tuesday.

Please note: Sheblossoms will not recommend a particular regiment of treatment or management. We will simply provide information to help you explore your options and hopefully make better decisions about your medical care.

So here we go!

1. What is Lupus? 

Lupus is an autoimmune disease. Autoimmune means that your immune system identifies tissue and organs as though they were a virus, bacteria or foreign body. The immune system then launches an immune response meant to protect your body but which instead harms it.

Symptoms can be mildly irritating, moderately disruptive or severely debilitating and life-threatening. They vary from rashes, inflammation, arthritis-like symptoms to renal failure and cardiac disease.

There are 3 main types of lupus, although lupus can have a few dozen variants within the categories.

a. Systemic Lupus Erythematosus – this affects connective tissue, body organs and the circulatory system (blood, heart and veins.)

b. Discoid Lupus – this affects the skin although it may or may not have aspects of systemic lupus.

c. Drug Induced Lupus – certain types of medication can induce lupus. Once those drugs are withdrawn the condition often resolves itself.

2. How do I know I have Lupus?

Because lupus often mimics other illnesses and disorders, it usually takes a while before diagnosis can come by. If you have had persistent issues of inflammation, fatigue and infection, your doctor might begin to screen you for Lupus.

A doctor who specializes in the care of Lupus patients is called a rheumatologist. A rheumatologist treats patients with autoimmune diseases such as lupus, arthritis, multiple sclerosis and the like.

It is much easier to get started on lupus screening if you see a rheumatologist. The doctor will look out for 11 main signs of Lupus.

Fact: there are currently 8 rheumatologists in Kenya to a ratio of about 200,000 lupus patients. (consider the fact that they also care for other patients with other illnesses that fall under rheumatology, in addition to training and teaching time.)

Have more questions about Lupus? Please add them to the comments section now! 

A Little Note about Me: My name is Juliet Maruru. If you’ve visited my blog before you probably know that and know that I have been dealing with chronic illness for a while. The symptoms have yoyod from mild to horrid to really life threatening.

A few months ago my diagnosis was upgraded to Mixed Connective Tissue Disease (a crossover of Lupus, Scleroderma and Myositis) with Secondary Cushings Syndrome (hormonal disorder affecting adrenal glands) and 2nd Stage Heart Disease. My doctors, nutritionist and fitness trainers have helped me work hard enough that I am hoping that in a few more months I can have the Cushing’s and heart disease catergorised to something with a better prognosis. I expect to continue managing MCTD for the rest of my life.

All of this has been taxing, mentally, emotionally and financially; not just for me but for my family, too. The #Sheblossoms campaign was started in the hope of alleviating the financial strain, and it has, in a small way – and for the donations, support and outpouring of love, I am deeply and incredibly thankful. I expect to continue dealing with these expenses – mental, emotional and financial – but in the campaign I found some kind of renewal and purpose.

I still don’t know for sure what my prognosis is. But as I wait for direction and resolution, I have decided to do my very best to help others find answers and guidance in accessing resources. A little part of this is selfish – from the realization that continuing in the dark silence I’ve existed in for the last few months might in a way lead to my giving up a lot sooner. But a large part of it comes from seeing how much my friends were willing to put themselves out there for me, and in a way completely removing my justification for self-pity.

This is a new leg of the journey for Sheblossoms. I suppose there will be more reflections of it on this blog and on my personal journey. Please enjoy the ride with me.