Choices

 

With the recent FDA approval of the drug “Olumiant” (baricitinib) to treat alopecia; it has gotten me thinking of choices.  The choices we all have concerning how about we navigate thru this journey of alopecia.

Alopecia takes  away the one fundamental choice we had prior to our first sighting of that clean bald skin, that coin size area where once we had our lush locks. It takes away the choice of what we do with our hair; cut, curl, colour, and style how we want and when we want.  We watch this area like a hawk and if you were like me started to count the hairs in my hair brush and anywhere else we found fallen hair.   I started examining my scalp each day and night for any new spots or thinning; watching in horror, fear and anger.  Alopecia had officially taken over my control and choice on what was going on with my hair.

It took many years of tears and anger, shame and hiding, depression and anxiety to understand that there are many options available for me; for all of us going through this disease.  So many more than when I was first diagnosed in the 1980’s.

Just some of those choices are:

1.       Treatments – these normally treat the symptoms of alopecia and usually consisted of an immunosuppressant drug.  I did the cortisteriod injections for over a decade trying to stay one step ahead of the bald spots.  I even convinced my doctor to give me the injections in my eyebrows when they started to fall out.

I even did the delightful DCP (diphenylcyclopropenone) treatment which the side effects far outweigh any sort of benefit.  I would blister so bad that my pillow would be wet with the serum from the broken skin of my scalp.

And now we have the new immunosuppressant drug Oluminant, a JAK inhibitor.

The following is taken from PUBMED

JAK inhibitors are small molecules that are capable of blocking T-cell-mediated inflammation. They have been shown to be beneficial in several inflammatory conditions, such as rheumatoid arthritis, psoriasis and psoriatic arthritis. Treatment with three JAK inhibitors, ruxolitinib, baricitinib and tofacitinib, led to hair regrowth in alopecia areata patients, and similar effects have also been demonstrated in animal models for alopecia areata. Based on these data, JAK inhibitors have gained widespread popularity for the treatment of moderate-to-severe alopecia areata patients. Nevertheless, treatment with JAK inhibitors can lead to adverse events, with infections being the most worrisome. Furthermore, the durability of JAK inhibitors for alopecia areata is still unknown. Clinical trials with topical and systemic JAK inhibitors for alopecia areata are ongoing, and hopefully will provide us with better understanding of the safety and efficacy of these medications. If indeed these treatments will prove to be effective and safe, they might become the first FDA-approved treatment for alopecia areata.

 

And recently posted on the NAAF (National Alopecia Areata Foundation) website:

“This is the dawn of a new era,” said Nicole Friedland, President and CEO of the National Alopecia Areata Foundation. “For the first time, alopecia areata patients have the option of an approved treatment that has undergone rigorous testing in clinical trials. We anticipate more treatments to come, bringing additional choices to our community.” Olumiant™ (baricitinib), belongs to a class of medications known as Janus kinase (JAK) inhibitors. Oluminant™ is approved by the FDA for adults with (severe) alopecia areata. Olumiant™, from manufacturer Eli Lilly and Company.

 

2.       We also have the choice to cover up; which can include all, or even a combination of choices of wigs, scarves and hats.  Personally I have done all of those at one time or another.  And even have fun with the choices that it gives.  There are many beautiful natural looking wigs that make you feel and look like yourself prior to any bald spots.  I even had fun with flamboyant colours of wigs and scarves and stylish hats.

There is even the cover up option of tattooing.  You can get a scalp tattoo to resemble the buzzed hair look, to fill in areas that are clear.  Or decorate your head with a decorate tattoo that speaks to you.  I have such tattoos; one on the back of my neck to remind me that I’m more than my hair and another on the side of my head to mark my 1 year anniversary of shaving my head.

 

3.       Which comes to another choice, a choice many may think is courageous and bold.  Shaving the remaining hair off and living openly bald.  This is the choice I had personally come to.  I had tried all the others and still continue to do so (other than the treatment part).  This is not to say I will never do another treatment again but at this stage of my journey I have chosen not to.

 

4.       Another choice worth exploring is the research going on about autoimmune diseases being a result of an inflammation in our bodies. I am currently reading Why We Get Sick by Benjamin Bikman and he mentions autoimmune diseases as well as other health concerns, definitely worth reading for anyone.  For the past year and a half I have adopted an intermittent fasting lifestyle not only to lose weight loss but also for all the many health benefits that comes with it; one of which is reducing inflammation.  Interestingly within 6 months of starting IF I found new baby fine hair growing.  Something I hadn’t seen in over a decade.  I watch curiously as my hair got a little bit longer but in the end I shaved this as it was patchy.  I haven’t seen any new regrowth since then but I still watch to see as I continue my IF lifestyle if my hair will start to come in again. 

I have now made a choice that if it does or does not I won’t let it take away my control of what I do.

There is many choices and combination of choices we as alopecians can do, ones that we are personally comfortable living with.  And many choices we may later decide to do.  We didn’t choose this disease but we can choose how we will live with it.  No choice is the wrong one and what one person may do, may not be something that another would consider. 

We are in this alopecia journey together, all the emotions and stages we have all felt together.  We can support each other, share together but the choices on how to travel this journey are ours to choose.