Episode 24: What To Do With Your Scarring Alopecia Diagnosis

Today’s episode of the podcast is about What To Do With Your Scarring Alopecia Diagnosis

KEY TAKEAWAYS COVERED IN THE PODCAST

• The best way to handle the diagnosis or misdiagnosis of alopecia

• Mind setting after hearing your alopecia diagnosis

• Scarring alopecia

• What to know and how to manage

• There are ways that we can reverse alopecia

• Why embracing change is better

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Transcription

Awaken to hair growth. Awaken to hair growth because there is, possibility to get your hair back. Awaken to hair growth because we're not told that we're able to conquer and overcome alopecia. Awaken to hair growth because I want to be a positive light and beacon for you because I've healed my alopecia and now I help others do the same with different types of alopecia, men, women, children, of all ages, of all races and ethnicities.

Welcome back everyone, thank you so much. This is the alopecia angel podcast, awaken to hair growth. Today we are discussing the diagnosis and the misdiagnosis of so many diagnoses out there and in particular to alopecia because around one-third of my clients have a misdiagnosis and it could be whether the doctors were mistaken or potentially where the client was mistaken themselves, or a combination of both. 

In either case there's been a misdiagnosis and what's more concerning is the fact that when you do receive a misdiagnosis. How you take in that information? How you respond to that diagnosis? Can be earth shattering or can be a challenge, right?

It can challenge you to do something else, to think outside the box and to work around the situation and a lot of this comes down to mindset. And for all of us listening, I'm assuming we've all had hair loss. We've all experienced alopecia to some extent, and anywhere you look forums, internet searches, potentially your doctors, your dermatologists, they all say essentially the same thing that there's nothing to be done.

That there's no cure, that this is what it is and you just should embrace the wigs, or you should just embrace going bald, or you should just embrace the situation and live your life as best as possible. And that bothers me a lot because as you can see, I have my full head of hair and my clients do too.

They're on the path to regrow and that's the empowered path. It really is the empowered path because many times what people say to us, whether they're teachers, doctors, authority figures, police officers, etcetera, is not a hundred percent the truth. And maybe it's not because they want to lie to us intentionally, but it's also because they lack the knowledge.

They lack looking outside of what's possible for them. And maybe they just go by the book. If we're told the sky is always blue, then that's what that is. The sky is always blue, but in many cases it's not, it's great. It's black, it's dark blue. It can change colors. It can change colors with the sunset. It could be a light pink too, you know, shades of orange.

So I've seen the sky turn many different colors and I'm sure you have too. So the sky is not just always blue. There's variations to that and that's where you have your power. That's where you can take control of your health and it's disheartening to hear from clients that they were diagnosed with a certain type of alopecia and they were left distraught.

They were left absolutely distraught, not knowing what to do next, not thinking or feeling that anything was possible. Then, of course throughout their journey, they encounter me, they start the program and lo and behold, they see that hair growth. They see the changes, they see the opportunity and they see the possibilities that come forth.

In regards to scarring alopecia, this has been a topic that many people have talked to me about. Here and there pick a scarring alopecia is one of those types of alopecia where medical textbooks say that there's nothing you can do, that your follicles are going to scar and you will not be able to have hair regrowth ever again.

Scarring alopecia is in my mind, almost the same as stage four cancer and it's scary, it’s absolutely scary. Any diagnosis for that matter is scary, especially when you don't have the knowledge, right? And so when you have more knowledge, you're empowering yourself to be able to overcome the situation and to see where you can create more space, more healing and more opportunity.

So in terms of scarring alopecia, I've had many clients where they come to me, they said, I have LLP. I have frontal fibrosing alopecia. I have this type of alopecia. I have that type of alopecia and again, whether they saw various doctors and each doctor gave them a different diagnosis or whether they just saw one doctor and the doctor gave them that diagnosis and I can't express enough how the belief we have for ourselves and for our bodies have such an impact.

It really does because the same clients take a chance on themselves. These same clients say, if there's anything I can do, it’s not the medications obviously. It's getting healthier in every aspect in every way possible so they take a chance on themselves, they do the program and lo and behold, that diagnosis doesn't hold water.

That diagnosis no longer is a threat because they're seeing changes because they're seeing hair growth and they're seeing improvements and that's all I can say really about scarring alopecia. I don't like to go down the rabbit hole of doom and gloom because I've already done that. I've already done that piece and it's painful and I've suffered a lot by reading up on alopecia, by reading up on what was going on with me when I was going through it and what could have happened and what would have been the worst case scenario and what would have been all these other tragic options.

And yet here I am more than seven years later and still with full hair growth, still thriving, still being the best I can in every way possible. And that's really the name of the game. That's really what we need to aspire to in order to be our best selves, not just for hair growth, but for our complete and total wellbeing.

It's mind, body spirit. It's a holistic approach and if you take that approach and you put yourself first, and if you focus on every aspect of yourself to improve it just a little bit, day by day, that adds up to an amazing increase over one year, over two years, over five years, over 10 years and yes, we can reverse alopecia, just like you can reverse MS. Just like you can reverse rheumatoid arthritis or psoriasis or eczema or Hashimoto's or graves or any other autoimmune disease or any other disease in general.

We can, with the right steps, with the right protocols, with the right diet and lifestyle, with the right support, with the right guidance. And when it comes to guidance, no one has walked in your shoes. No one has walked in your shoes in terms of probably the doctors you've seen or the dermatologist or anyone else. And that's what I found, at least for me in my experience and what I've talked to with my clients, no one has walked in their shoes and potentially this is why they gravitate towards me.

Potentially, this is why I'm able to help my clients on a different level, because A.) There's more compassion. B) There's more support and C.), I know exactly what you're going through. In terms of walking your shoes, no one is in your shoes. Therefore, they cannot make decisions for you. Therefore they cannot be so adamant that, you know, this is not going to work, that this is your only choice that, you know, minoxidil, Rogaine, the injections, the cortisone shots. These are your only options, it's not.

Don't let someone else dictate what your options are first and foremost, and don't let somebody else influence you, who hasn't experienced, what you're experiencing, who hasn't walked in your shoes. That's another key indicator that something's amiss, that something's wrong and not to say that in order to give advice, you should have walked in someone's shoes, but at least you should have a little empathy and that's one core ingredient that there's no time for in a 10 minute evaluation or in a 15 minute consultation that you normally get with doctors because, you know, time is of the essence.

And you're just another number and the unfortunate part of that is, is that they're going to tell you though, the cold, hard truth real quick. And a lot of times it's not even true. A lot of times it's just what they believe to be true and many times what I tell my students and my clients is that the first step in healing alopecia is believing in yourself, is believing that you can do this. It's believing that your body can support you, it’s believing that your body can overcome alopecia, that you can do better, that you can and have everything that you need to get better and to get healthier.

You just need a guide. You need a plan, a strategy and you're on your way. That's really what that takes. So if you have a misdiagnosis, what to do, or if you have a diagnosis, let's just say that. Let's say you have a diagnosis, you just got back from the doctors and they're telling you, you have this type of alopecia, that type of alopecia, you have scarring alopecia.

I would say, take it with a grain of salt, take it with a grain of salt, whatever diagnosis it is because fear will lead you to make the worst decisions ever. Fear will lead you into a place where emotions take over instead of knowledge. Where if you allow emotions to take over, then you can't think straight, you can't make the right decisions.

And on top of it, you're going to give in into a certain decision that potentially the medical institution wants you to do, to fear and ideally what I would want for you is to take some time, to create space, to be able to research, to do your due diligence and to take your diagnosis and, you know, decide what's best for you. Is it the conventional medicine route? Is it the natural holistic route? What is that? And what does that look like? And, you know, what are the results? And also what are the long term effects? What are the long-term opportunities and possibilities and comparing contrasts? It's like anything when it comes to a big decision, I look at the pros and cons of everything, and I like to scrutinize.

I like to scrutinize what people are telling me and I like to ask a lot of questions and so advocating for yourself requires you to ask more questions, requires you to do more, like work, so to speak. To get more second and third and fourth opinions and to see what truly is best for you, because no one can decide what's best for you, except you.

And when it comes to the parents with their children, it's the same thing. No one knows your child more than you do, and no one can decide for your child as best as you do and you can. And so don't let that power be taken away by the fear of a diagnosis or by someone trying to corral you into a certain medication or toward a certain way of treatment that maybe you don't feel comfortable with, or maybe you don't feel that is correct for you.

So I'd like for those of you who are diagnosed with scarring alopecia to take heart. To take heart, but then also to look at what areas and what you can do to get healthy. And it's not just body-wise, it's inside as well. It's a mind, body, spirit approach and do everything that you can. If you want help, we're here for you. If you want a road path that many of my other alopecia patient clients take, then I would be happy to offer that to you as well.

And the thing is that, the only guarantee there is, is the guarantee that the work you put in is the work you'll and the effort that you'll get out. So no one can do the pushups for you. No one can lift the weights. No one can drink all the water that you need to be drinking, only you can do that. No one can do that for you and so this is, you know, it's a catch 22 because we all say, oh, I want this, oh, I want tha but then the real percentage of people who truly want it, we'll do the work.

And that's the fact of the matter. Not everyone is going to do the work. This is why they have percentages of people that go up and join the gym January 1st  and then by January 25th, more than half of those people have bowed out and stopped going and so it can't be something temporary.

Change is, it’s for the better. Change will take you to that next level. Change will take you to a higher level of where you want to be and where you need to be and it's uncomfortable, I get that. Even lifting weights is uncomfortable and your pain, uh, there's pain involved. There's a soreness afterwards, uh, your muscles contract and, you know, they grow bigger, you know, all your clothes feel a little tighter, but then it just reduces and it becomes stronger and so lifting weights one day doesn't make you stronger on the first day. It takes weeks. It takes months for this to happen.

Same thing if you're looking for flexibility, you know, you can start doing yoga today, but that doesn't mean you'll be able to do the splits. So that will take time and so this is important to note because you're betting on your comfort zone. You're betting on your possibility. You're betting on your determination and on your discipline. It does take determination. It does take discipline, but if you want your hair back, if you want your health back, this is all unnecessary, it really is. It's all necessary and it all comes together.

So with those of you who have a diagnosis that you’re still unsure about because maybe your doctor was unsure of the diagnosis as well, and didn't know how to diagnose you and just spit out something and said something just to cover their tracks. Potentially you're misdiagnosed, potentially you’re FFA you’re LLP and all these other scarring type alopecias are really not hindering or happening to you.

Potentially it looks like it, it could seem like it, but maybe it's not and for those of you who already have it, and who are solid and like, yes, I really do have this. What to do? I'd say it's never too late to get healthy. It's never too late to take the next steps towards bettering yourself and I'd say, take a chance on yourself. Take a chance on your body and on your health because just because the doctor says, guess what? You have scarring alopecia, there's nothing you can do. I'd like to challenge that and say, yes, there are plenty of things I can do.

I can be the healthiest person possible and with that effort I will, and you will see results. This is important to note because just like for alopecia areata, which I had, they told me, hey, you know, there's no cure, nothing's going to happen. You're going to have to get injections every month. You're going to have to do this. You're going to have to do that. I was scratching my head. I was like, this is impossible. This doesn't sound right to me. This doesn't feel right to me. And it's not a long-term solution. There's no way I could be getting injections every month in my head and make time for this. That doesn't make sense.

And on top of it, it didn't make sense that I had all this hair throughout my whole life and then all of a sudden it was going to go away. All of a sudden at the prime age of 30 something, I was just gonna go ball and accept and start wearing wigs. Oh, no, no, that was not going to be my fate and you know, I'm determined, I'm driven and focused. And so this is why I feel for you because I've walked in your shoes. I know how you feel and I know there's a better way. I know there's a better solution. So take heart with any diagnosis.

I had a client yesterday in a coaching call. She told me that she was diagnosed with menopause with full menopause at the early age of like 42 43, which in, in my eyes is very young to have menopause. However, I know people as well, not clients, but like friends and family members who have a diagnosis of menopause at 35 or at 38 and this is concerning as well cause it's really early. And again, the doctor in this case told her there's nothing you can do about that. It's just, you're in menopause and you're just going to have to accept it and move forward.

And many times, that's the only option that they give us is to accept it and move forward but I would like to counter that. I would like to always challenge that and research because there's definitely people out there who've written books. There's definitely people out there who've made their information aware in public so that other people who are just as driven or just as looking for an out of the box situation or out of the box solution or out of the box results to get it. And I like to research these people. I like to read these books and I like to see, you know how this information counters and what that looks like in all possible avenues in terms of getting healthy, not just for today, but the next 40, 50, 60 years of your life until you're 90 and you know, 90 plus and so this is important.

In this journey, it's also good to keep in mind, of blind spots because blind spots can hinder your process of getting healthier blind spots can hinder your process of getting the hair you want. And if you don't know what blind spots are, I recommend you listen back to episode number two, blind spots will be very thoroughly explained there in episode two and getting healthy in all areas of life is essential to your mental, emotional, physical, spiritual health and also for your hair health, also for your physical health, it's all connected.

So I would say, take heart with the diagnosis. Know that there's more power in you that you are potentially given away. If you succumb to believing the misdiagnosis or potentially you're believing what Google says or potentially you're believing what forums say or what certain associations say or organizations and so always look for the other side. There's always another side of the coin.

There's always another way, a third door, another alternative and maybe it's not brightly displayed, you know, with neon lights shining at you, but at the same time, it could definitely be the door that you need to take. It could definitely be the opportunity that's waiting for you. 

Thank you so much for joining me. This has been the alopecia angel podcast, awaken to hair growth.

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