Autoimmune Diseases: Lupus Awareness

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When we talk of social media as being a very essential tool for communication and disseminating information, some cynics tend to doubt its importance. This article is wholly culled from a discussion on my friend Kobby Blay’s Facebook wall when he made a simple post about his own immune system attacking itself and wondered if that was even possible.

Dr Dzifa Kuwornu, a health advocate for communicable diseases stepped in to educate his readers about such diseases. Truth be told, yours truly had no idea this condition existed and that is why I’m sharing this.

 

The dialogue will be between Kobby and Dr Dzifa with several people chipping in but I assure you it’s worth the read.

So Kobby (KB) asks “this is scary, but why should my own immune system be attacking itself?”

Dr Dzifa Kuwornu (DK): we are talking about autoimmune diseases.

KB: oh, so doc your body’s immune system could fight itself? How is that?

DK: yes in autoimmune diseases the bodies disease fighting cells start attacking each other, the cells they are programmed to protect.

KB: how come?

DK: well, the exact cause is not known but we believe it is a combination of genetic and environmental factors. People with autoimmune conditions have the genes that make it susceptible to having the immune system go awry and it usually starts when an environmental trigger sets it off for example an infection, extreme stress, etc

Once triggered it starts overworking and when previously it would have done the its job and gone to ‘sleep’, now it does not get the signal to stop and continues to destroy itself.

KB: meaning your immune system under this situation wil be overworking right?

DK: your immune system is what helps you to fight foreign substances that enter the body. It is programmed in such a way that once it recognizes something as foreign it would attack it until it destroys it.

So if it identifies itself as foreign by some miscommunication it would attack that part of the body until it destroys it.

(This part sounded pretty grave to me)

Anna Abaitey (AA) interjects here with further explanation:

Exactly, whereas a normal person wakes up every morning feeling refreshed, people with autoimmune disorders wake up in the morning feeling tired and exhausted.

Every day comes with problems but people with autoimmune disorders wake up every morning with boxing gloves on, ready to kick this disease.

KB: wow Anna you don’t say. That should be very painful.

So is there a particular group of people that this affects and is it relative to age?

DK: true Anna, fatigue is one of the most troublesome problems people with autoimmune conditions face.

Kobby it can affect anyone though a lot tend to be women depending on the disease type.

KB: what are some of these autoimmune diseases?

DK: age; again that depends on the disease type. Lupus tends to affect young women or men in their reproductive ages. Rheumatoid arthritis may affect slightly older group though young people may be affected too.

Some examples: rheumatoid arthritis, systematic lupus erythematosus or lupus, multiple sclerosis, juvenile idiopathic arthritis, type 1 diabetes, thyroid disorders, there are a lot. (now that’s scary)

AA: the common ones are Lupus, rheumatoid arthritis, moisitis, fibromyalgia, etc.

KB: so how do I know if it’s an autoimmune disease?

DK: well it depends on the type and where it affects. We have those that are localized and then those that are systematic.

Localized one affect only one cell type eg the pancreas causing diabetes.

Systematic ones can affect any organ of the body. Thus depending on the part of the body affected, that would determine the tests to be done.

There is a screening test called the ANA that can be used to start the process but these tests cannot be done by just anyone. You need to see a specialist in that field or physician specialist.

Dorcas: there are 2 types of Lupus, discoid – affects skin and systemic affects organs.

Akua Ofosu chips in that one will have to see a specialist for an investigation and not a drug store attendant.

KB: Dzifa, can I prevent it?

DK: that’s a difficult question to answer because we are not yet sure exactly what is causing it, especially in our part of the world where it was thought not to be common. We need more research to tell us why the increase.

We advocate living healthy, avoiding processed food as much as possible, more fruits and vegetables, diets rich in the omega 3 and 6 fatty acids.

If we knew the cause then we will know how to prevent it.

Suzie Quartey asks a question: what are the chances of a sufferer going into remission?

Nii Otoo Ankrah: Suzie used remission which means it’s something that you get to live with the rest of your life. How difficult is it to manage financially?

AA: there is no cure for autoimmune disorders but the disease can be managed. If well managed, one can go on remission (a state when the disease gets less active)

DK: some people have had the condition starting after a stressful life event, some after certain procedures or medications.

They are expensive diseases to have. The tests for diagnosis can be expensive and so are the treatments and these are as said conditions that can be lifelong.

Unfortunately if not well managed, people can lose their jobs, etc

KB: Anna you seem to have some experience too, what can you share with me?

AA: financially, lemme take a deep breath, it’s not easy. It is very costly.

I was diagnosed with sensory motor neuropathy 11years ago and it’s been a long and interesting journey. I have learnt so much sometimes I even sound like a doctor.

It hasn’t been easy though but you learn to smile through the pain and be happy.

Suzie: autoimmune diseases are invisible to see making sufferers difficult to explain when they have a flare.

AA: it is very difficult to explain how you feel to others. People always think you are exaggerating or overreacting.

Nii Otoo: how many doctors do we have who have specialized in treating this type of condition and how much do people really know about these autoimmune diseases?

DK: true. There is very little awareness about autoimmune diseases, though they are more common than HIV/AIDS, sickle cell disease, muscular dystrophy, cerebral palsy, and cystic fibrosis all put together.

In terms of rheumatologists we have only 2 in the whole of Ghana. For the autoimmune diseases that affect other parts of the body like multiple sclerosis, the neurologists deal with that.

KB: Doc, now to home management. How can anyone with any of these autoimmune diseases manage him or herself well at home?

DK: for people with lupus, proper treatment can minimize symptoms, reduce inflammation and pain, and stop the development of serious organ damage.

With the current methods of therapy, 80 to 90% of people with non-organ threatening lupus can look forward to a normal lifespan.

These are not conditions to leave untreated.

DIET

It is hard to prove any connection between specific foods and disease activity. Obviously if you have food allergies you should avoid such foods. Otherwise a well balanced diet is generally best.

Diets in high fish and fish oil are relatively immunosuppressive and can help reduce inflammation.

To keep inflammation down the best studied are diets high in fatty fishes – salmon, mackerel, tuna and menhaden. They are known to reduce inflammation and so can fish containing omega3 fatty acids called EPA and DHA, as well as evening primrose oil.

Also green tea and green tea extracts can help reduce oxidative stress caused by inflammation and maybe tissue damage.

LIFESTYLE

Life with autoimmune diseases can be difficult and it’s natural for the physical effects of the disease and the prescribed medications to get patients down. You have to bolster self esteem and combat negative thoughts and really focus on the positive.

As many as 80% of people will experience fatigue and it’s unclear whey extreme fatigue occurs in so many people with autoimmune condition.

With your doctor’s approval, exercise can be a great tool for dealing with symptoms. Sometimes however, traditional exercises – such as aerobics class or weight training can be difficult whilst dealing with swollen joints and fatigue.

Yoga, Tai chi, Pilates, swimming on the other hand can be very useful for those with these conditions.

I can’t overemphasize the need to take your medications, though we know it can be challenging and comes with its own attendant problems.

AA: medications are very important. For people with these disorders, you cant possibly live a normal and pain free life without medications.

Nii Otoo: are these medications that are so important for patient’s survival covered by health insurance since they are very expensive?

If not, why?

Are there any efforts to get the drugs on health insurance?

DK: unfortunately no, they are not covered by health insurance. We used to get prednisolone which is not the definitive treatment but even that sometimes is hard to get.

Why? I guess because they are so expensive and the health system also is not aware about the increasing prevalence of these conditions.

We also hope that with the new standard treatment guidelines and the NHIS being involved in the drugs listed, we hope that it would mean drugs also get on the scheme.

We have to lobby the authorities by making our voices heard that these conditions exist and are causing a major challenge.

KB: hold on Doc, are autoimmune diseases inherited?

DK: the disease seems to have a hereditary component but it may not be directly inherited like say sickle cell disease. You may find different autoimmune conditions in one family, not direct mother to child usually.

People are more susceptible to developing an autoimmune condition if they have immediate relatives with the disease, but that doesn’t mean they will. In fact, most wont.

Even if a person with lupus has an identical twin, there’s only a 50% chance the undiagnosed twin will develop it.

(whew! That’s a relief to hear)

KB: what does every person diagnosed with an autoimmune disease like lupus need from friends and family, and the society?

DK: what do they need? Support and understanding.

That they are not pretending, they are not lazy.

Just the chance to live a normal life, have a family, an employer who understands the challenges.

AA: support and understanding. We feel a lot better when we know we’ve got people who understand us and will always be there for us. Makes life a whole lot easier. We don’t need sympathy. Not at all.

KB: is there a platform to know more? What does the organization do?

DK: please like the page on Facebook The Rheumatology Initiative, TRI Ghana, to learn more and support people with autoimmune conditions.

The Rheumatology Initiative is a nonprofit organization dedicated to providing education, advocacy and research into autoimmune conditions in Ghana and Africa.  https://www.facebook.com/autoimmune.trighana?fref=nf

Come join us the first Sunday of every month as we share experiences and also learn how to manage our conditions at the Christ the King Church hall near the flagstaff house @2pm.

Watch out for our autoimmune awareness raising event in August.

KB: it may have to end here doc and thank you. Your years of practice and support for people with autoimmune diseases are worth unending praise.

 

For yours truly, I didn’t even know such a condition existed and now that I know, I am sharing. Hope it was an interesting read for you as it was interesting and educative for me reporting and sharing it with you.

Support people with autoimmune diseases, they are not lazy. Make it a point to find out what is wrong with people before you judge or brand them.

Like I always say it begins with YOU!!

 

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3 Responses to “Autoimmune Diseases: Lupus Awareness”

  1. thanks, this has been very helpful.

  2. Ama Benewa T. Says:

    This has been very informative. At the beginning, I thought Anna was a doctor. Interesting to know she knows that much just because she’s suffering from an autoimmune disease.

  3. mark nartey Says:

    Educative. Informative. illuminating. Insightful. Thanks for sharing.

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