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RARE INSIGHTS

PTEN Awareness Day - Proud to be a PTEN Warrior

23/10/2019

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Rare Revolution is delighted to welcome guest blogger Jodie Harris who is proud to be raising awareness for PTEN
What is PTEN? A bunch of meaningless letters to most people but for me and many others it is a different way of life that no one could ever anticipate. 
On the 17th of July 2019, after finding a lump in my breast that felt a bit ‘odd’, I was diagnosed with stage 2 grade 3 breast cancer at the age of 24. This has led my life in a completely different direction compared to how I thought that I would be spending my twenties. The doctors class it as being caught early but because PTEN is the cancer suppressor gene, my tumour is growing fast and has already spread to one lymph node under my arm. 
So what now? I’ve already been through my IVF injections and an egg collection as chemotherapy may affect my fertility. To follow is 6 rounds of chemo, a double mastectomy, through choice, radiotherapy and potentially 5 years of hormone therapy. That sounds like a lot for someone my age to deal with but it is the stark truth for anyone with this syndrome. You can sit and tell yourself that it will not happen to you but if and when it does you have to quickly learn how to adapt. 
I’m not going to lie - it isn’t easy! There are definitely highs and lows but it’s all about how you deal with them.

Let’s get the negatives out of the way first of all.

After my first session of chemo I suffered two seizures. Completely unrelated to the chemo treatment I found out that I have a cavernoma in my brain which is an unusual collection of blood vessels which can
haemorrhage. This is what happened in my case and the bleed then caused the seizures. This leads to another negative - I’m not allowed to drive for at least a year! I just got a new car and now I can’t even use it! It is such a minor issue but for a girl who is so used to independence I’m finding it quite hard.

Next, chemo side effects are no joke. In hindsight I’ve had it quite easy as I haven’t felt sick or anything like that but in terms of joint pain and tiredness it is nothing like I expected it to be. When my doctor told me the side effects my first thought was “well everyone surely experiences that in their day to day life, how hard can it be?” Turns out I was very naïve. Although I feel I have had it easy with not experiencing every symptom, it doesn’t make the ones I have had any easier to deal with. I’m now learning to listen to my body and figure out what it can handle.


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I’m done complaining now, there are lots of positives in my life that have stemmed from going through cancer that need mentioning​
Firstly and most importantly I have a great support system behind me and my family have been there every step of the way with me. For that and so many other things I can never thank them enough. There are also so many people that I have connected with in the PTEN community and through them I have gained so much education and inspiration from hearing all of their different stories.

Going through a life changing experience like I am right now has also made me a little braver I think! I want to make a difference and I am now gaining the confidence to do this. I have just been made a member of the PTEN International Family Council, a position which I am honoured to have and hope to use to spread more awareness and education of this syndrome. I am going to start a petition in order to lower breast screening ages as I don’t want any woman to go through what I am going through at such a young age. I am also thinking about writing a book! I am currently writing a blog but I have been told I should turn it in to a book so this is something I would definitely like to explore! 
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All in all, being in a situation like I am (having the PTEN mutation and cancer) is scary but I am far from alone. There is a community behind me of fellow sufferers fighting their way through each day and yet there is so much more to be done. There is still more awareness and education needed and I am truly confident that we will get there.


I am proud to be a PTEN warrior!

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Time.

18/10/2019

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       continued from RARE Gene Therapy edition. To read from the beginning click here

Noelle Kei, beloved friend of RARE Revolution's, Nicola Miller, talks about the gifts of time and faith and how this powerful rare mama is now facing her own race, having being diagnosed with diffuse systemic scleroderma and having stem cell treatment
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​Were you and your family offered, any form of counselling ahead of making the decision and/or before starting the treatment? 
 
Yes. Before any transplant the hospital assigns every patient a social worker that meets with you to conduct a psychological assessment of your readiness to undergo such a difficult procedure. They offer to meet with your significant other and/or caretaker and children so that they can explain it in terms that young ones understand what will happen, so not just for the patient, but for the caretaker as well as the family as a whole.
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​Can you explain the process for medical insurance in funding such a novel therapy, and how you managed these financial pressures and burden?
 
My insurance company paid for all of my pre-transplant work, up to and  including a round of chemotherapy and the placement of my port. A few weeks before I was admitted to the hospital my insurance company denied my transplant, on the grounds that it was not a covered benefit for my diagnosis in my plan brochure. If I had leukaemia or another covered condition, then they would pay for it. It was devastating.
 
My haematologist, along with his nurse and my transplant nurse (assigned by my insurance company to assist with approval of treatments) worked tirelessly to get my transplant covered. One day whilst sitting at City of Hope I received a call to tell me that my transplant had been approved and that they made an addendum to my policy giving an exemption for scleroderma to be covered. A short while later I received a follow up call only to be told that a mistake had been made, and I was still not approved for the transplant. This was another devastating blow.
 
After rapid intervention and appeals we finally got confirmation that the insurance would cover the costs. For all of the testing prior to transplant, a month long stay in the hospital with a transplant and all the post op care; my insurance company was billed more than a million dollars. The endless EOB’s (explanation of benefits), several re-billings coupled with the fact that my insurance was using a third-party company to pay and manage the claims only made things more confusing.
 
I had thought that what I was charged in 2018 was my final copay due. It wasn’t until a year after my transplant that I received my final bill from the hospital. That copay and co-insurance amount, coupled with the beginning of a new year of out of pocket expenses added to my hospital bill; totalling thousands of dollars.
 
The hospital has been very helpful in working out a payment plan with me, but nonetheless this bill along with many other medical expenses certainly adds a layer of stress to me in my recovery and to my husband.
 
What after-care and emotional support are you receiving post treatment?
 
I have had a wonderful team of doctors that have supported me throughout, including the difficult recovery post-transplant. My case has had its unique complications and I have always felt that my doctors have gone to great lengths to help me tackle any of the symptoms I have. They have always shown great concern not just for myself but for my family as well.
 
I went into this knowing that HSCT would not be a cure for me but had hoped it would halt the disease progression. It’s looking more and more like it has simply slowed the progression which I am still grateful for. Before my transplant I was given two years to live. While I have bought myself more time my future is uncertain, and it’s hard to predict how long I have staved off the worst of this hideous disease. Each day is a gift and I’m grateful to still be here with my husband and children. My husband has shouldered so much throughout this ordeal. From juggling the responsibilities of a job that often takes him away from home, to taking over household duties while being a caretaker to me. He truly is my hero and I’m thankful for him each day.
What if any, support and counselling have your husband and children received?
 
We have had such an incredible supportive village surround us during some of the most difficult days. From our family to our friends, from school, work, church and the dance community, we have had many helping hands. I can’t count the people who have given so much service to our family. Whether it was a call or text to check in to see how we are doing, shuttling our kids to school or their activities, driving me back and forth to my appointments with a four hour journey back and forth, not including time away from home, or the daily meals brought to our home during the week so that my husband didn’t have to figure out dinner after his long commute home from work.

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Noelle and her family
Between counselling with ecclesiastical leaders of our faith or with professional counsellors when needed our family has been greatly supported. Going through such an arduous treatment doesn’t just affect the patient. It effects the entire family unit. We have been blessed with a community of many that have helped to lift not just me but my entire family.

Has your faith helped you and the family during this time?

 
It has tremendously. I don’t think we would have been able to endure what we have without the faith and knowledge that we have. When I first heard I had a life-limiting illness it was very difficult to deal with.
 
I felt panic with the thought I would no longer be here for my husband and my children. Especially having a son with his own rare diagnosis and the unique measures needed to care for him. It was especially difficult as I found myself somewhat awake in between each episode where my heart stopped three times in one day. I prayed for peace that if it was my time to go I would be ok. And I prayed that my family would be taken care of.
 
When life has got overwhelming and my burdens too big I know that my Heavenly Father and my Saviour Jesus Christ will help carry me and my family through whatever we are going through. I have had so many people not just of my faith but many different ones praying not just for myself but my family as well. We have certainly felt those prayers. There were so many different things that just fell into place from when I got sick to the time of my transplant and I don’t think these were just chance. At times I have felt like I have had not only earthly angels looking out for me but heavenly angels as well.

​What has been and is, the biggest challenge of managing your health whilst also raising a child with rare and complex health needs?
 
I think asking for and accepting others offers of help. We have had a lot on our plate juggling my rare disease along with our youngest child’s rare conditions and the health of other family members. When you add that to just the everyday tasks of running a household and making sure everyone is taken care of and gets to where they need to be it can be overwhelming. It was hard to accept help, but we soon realised that’s there’s no way we can do everything on our own especially with me being so sick. We haven’t been able to travel as much as a family and celebrations have been paired down because I wasn’t in a position to help. But it’s brought us closer together as a family and helped us realise that it doesn’t really matter how we spend our time together as long as we are together. And for that I am grateful for each day is a gift.
 
Is there anything you would like the health care professionals to know about your rare journey so far or things that they could have done to make things easily for you and your family along the way?
 
Listen to your patients. They know their body best. Let them help partner in their own healthcare. I am lucky that my doctors have listened to me and let me help guide my course of treatment. Because of that (coupled with many tender mercies) I was able to go from diagnosis to transplant in five months. Many patients spend longer than that just trying to get insurance to approve the transplant. I know everyone’s complications are so individual, but I think perhaps more could be done to prepare patients and their families for what to expect during and post-transplant. I would encourage clinicians to make more emphasise on the importance of educating the patients caretaker and families and supporting them in the aftercare.
 
What resources and signposting have you found helpful that you would like to share with others?
 
https://www.scleroderma.org
 
https://selfmanagescleroderma.com
 
https://sclero.org
 
https://sclerodermainfo.org

Glossary of terms

Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body's own tissues and organs. The condition is characterised by the build-up of scar tissue (fibrosis) in the skin and other organs. The condition is also called systemic sclerosis because the fibrosis can affect organs other than the skin. Fibrosis is due to the excess production of a tough protein called collagen, which normally strengthens and supports connective tissues throughout the body. https://ghr.nlm.nih.gov/condition/systemic-scleroderma

Diffuse cutaneous systemic sclerosis (dcSSc) is a subtype of systemic scleroderma (systemic sclerosis) characterised by skin hardening (fibrosis) and problems in many organs of the body. The disease can occur at any age but mainly affects people between 40 and 50 years of age. Symptoms include Raynaud’s phenomenon; skin fibrosis beginning on the fingers and face that rapidly becomes generalized; spider veins (telangiectasias) on the thorax, face, lips, tongue, and fingers; gastroesophageal reflux; and difficulty eating (dysphagia) along with weight loss, vomiting, diarrhoea or constipation. Dry mouth and dental involvement can occur. Joint pain (arthralgias), muscular pain, weakness, cramps, and destruction of the tips of the fingers or toes (acroosteolysis) are frequent. Severe problems involving the lung (fibrosis or pulmonary hypertension) and kidney problems may also occur. The exact cause of the condition is unknown. There is currently no cure. Treatment depends of the symptoms, but may include medication and surgery.
https://rarediseases.info.nih.gov/diseases/9751/diffuse-cutaneous-systemic-sclerosis

Haematopoietic stem cell transplantation (HSCT), also known as blood and marrow transplantation (BMT), is used to treat wide spectrum of haematological, and increasingly, non-haematological disorders. Autologous transplantation uses the patient's own stem cells, which are harvested prior to high-dose therapy. 
https://www.england.nhs.uk/wp-content/uploads/2018/07/Haematopoietic-stem-cell-transplantation-All-Ages.pdf

Copay is a fixed amount for a covered service, paid by a patient to the provider of service before receiving the service. It may be defined in an insurance policy and paid by an insured person each time a medical service is accessed. 



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Mental Health Special: A monster in my brain

8/10/2019

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October 10 2019 is World Mental Health Day to raise awareness and mark this day we have published a MENTAL HEALTH Special supplement and are running a series of blogs
#WorldMentalHealthDay
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​​Molly Barr was diagnosed with an arteriovernous malformation (AVM). 
Molly talks candidly to RARE Revolution about what she termed as living with a monster in her brain and the impact it had on her mental health after she was considered healed

My mental health​
I want people to know that once I was considered healed, that was not the end of my journey. People who are chronically ill fight another battle too. This is the battle of the after-effects which include depression, anxiety, and post-traumatic stress disorder (PTSD). About a month after I was told that I was cured, I found I was unable to leave the house by myself, unable to go to work, afraid to do anything. I knew something was wrong and I was diagnosed with anxiety, depression, and PTSD as a result of what I had witnessed, and experienced.

I have been through tons of therapy, tried loads of medicines, and even tried outpatient hospitalisation. I have my symptoms under control for the most part after three years now, but I struggle with them on a daily basis. I continue to experience visual seizures due to the scar tissue of my procedures, and everyday is a new challenge. My passion is to raise awareness about AVMs and PTSD/anxiety and help people make positive life decisions. AVMs are considered a rare disorder but many go undetected until it's too late.

I share my experience because I want to make a difference, this is my experience of AVM...
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A monster in my brain
I learned that I am very hard to kill. “50 per cent chance you will die”, is one of the first things I heard when I was diagnosed with an arteriovenous malformation, AVM. An arteriovenous malformation is a tangle of abnormal and poorly formed arteries and veins in the brain (or other parts of the body) and is a congenital disorder (present at birth). My AVM was three cm in size, about the size of a walnut. The average brain is only 15 cm. So, my AVM was considered rather large. Plus, it was located in my occipital lobe, right in my vision and speech centre. I was already 24 years old and lucky to have found it. I was having severe migraines since the age of six. 
​Finally, by age 24, it was time to investigate, as the migraines’ frequency increased significantly, and the pain was intensifying.
 
The MRI revealed what I call the “monster” in my brain. AVMs tend to have bleeds or what most people know as aneurysms. The walls of the veins thin and eventually burst. I am extremely fortunate that I lived as long as I had without a bleed. Not to mention that I hadn’t ever taken any non-steroidal anti-inflammatory drugs, NSAIDs (thanks to my mom) or recreational drugs, and I had even been hit in the head as a child with a piece of concrete by a classmate and yet...here I was. Seemingly, a healthy adult with a time bomb in my brain. My journey was about to begin. A 10-year journey that would forever change my life. Because of the location of my AVM, I could not undergo a cerebral craniotomy (brain surgery) as it could result in blindness or death. I live in Northern Virginia in close proximity of Washington, DC, and I am extremely blessed to have access to such amazing medical experts. We were sent to Georgetown University for the first step in the process. 
 
I had my first cerebral angiogram (a diagnostic test using an x-ray that produces an image to help find blockages or other abnormalities) in 2007. For this process, doctors enter your groin at your femoral artery with a catheter. You are awake for this whole process, but it is a threshold consciousness, so there are times that you feel asleep and you half-remember what happened. The doctor guides the catheter through your arteries up to your neck and pushes a dye into your brain in order to see the AVM and take X-rays of its functioning. Afterward, they close the femoral artery. This can be done via hands-on pressure for fifteen minutes or with a collagen plug. The recovery is a few days of rest and no heavy lifting. I had a total of twelve angiograms (a type of x-ray used to examine blood vessels) over the ten years. They were painful because I could feel the catheter exiting my body and my body was sore; dangerous because the dye could affect my kidneys and I could bleed out from my femoral artery; embarrassing because the entire operating room (always teaching hospitals) would see me naked; and upsetting because the news was never good afterwards.
 
I was told that my first step after the angiogram would be to undergo an embolisation. An embolisation is performed like the angiogram, but you are fully anesthetised while the doctor injects Onyx, a liquid metal-like substance into the veins. Over time, the Onyx hardens and blocks blood flow through the AVM, forcing the flow to find a normal path. The doctors at Georgetown could only complete three of these procedures. They couldn’t get into some of the smaller veins of my AVM. These procedures took almost a year to complete,  and were some of the most painful I have ever felt; waking up to the endotracheal tube being pulled out of my throat after each procedure was difficult. In addition, I would get explosive headaches that made me feel like I was dying. My Mom had to bathe me and take care of me like I was unable to perform these tasks alone. It was an extremely tough year. 
 
After these procedures, I started experiencing episodes, which after awful testing, a seizure specialist diagnosed as visual seizures. My driver’s license was taken from me until the seizures were under control. I fight with these episodes to this day. They are painful, causing partial loss of vision, and while medicine helps, they remain.
​Once we learned the doctors at Georgetown couldn’t help further, we were referred to University of Virginia for Gamma Knife radiation (a type of radiation therapy used to treat tumours, vascular malformations and other abnormalities in the brain). This is an all-day procedure, which starts early in the morning by being put under and having a metal halo attached to your skull in four places. Then, in the operating room, I had an angiogram, after which an MRI is completed with the halo attached. The final step is to complete the radiation. It is a long day - painful, exhausting, and the worst part is hearing the crunching of your skull when the halo is unscrewed. Radiation can take three years to shrink the AVM, requiring progress checks every six months via an MRI.
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Gamma Knife
Every six months, we travelled for two hours to UVA (University of Virginia Health), where we would receive bad news including that the radiation wasn’t working because the embolised material had blocked it. After three years, we learned it hadn’t worked, not to mention, the hair loss I experienced. Some people didn’t notice the chunk of hair that was missing, but it took an emotional toll on me. Because the radiation didn’t work, we did a fourth embolisation and then a second Gamma Knife radiation. During the second radiation, I got violently ill and vomited for three hours. The nurses told me I couldn’t complete the radiation because I couldn’t stop vomiting. So, I willed myself to stop because I refused to go through all of that again. Finally, after an additional three years, I got good news, that my AVM was obliterated. The AVM still sits in my brain, but technically it is not active anymore. I have annual check-ups to see if I have any scarring from the radiation, cysts, brain tumours, or if the AVM has opened again.  

It was after being healed that my mental health battle began and I was then diagnosed with anxiety, depression and PTSD. Mental health problems can occur at any point in anyone's lives and are something that I struggle with everyday. I 
 hope that sharing my experience will help because I want to make a difference.


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Mental Health Special: The Recovery Letters

7/10/2019

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MENTAL HEALTH Special for World Mental Health Day, October 10 2019

When James Withey was suffering from depression, he craved something to give him hope. No one spoke about recovery or healing. There was no light at the end of the tunnel, only darkness. And so James set about creating the sort of thing that he had needed at his lowest ebb; a collection of stories telling others there is hope, it’s not all blackness, you can get through this. And in helping others, he has also helped himself. This is James’ story

PictureJames Withey
​Depression is a bugger. A real git. To be honest, I could use much stronger words than this and often do.
 
Depression has been with me all of my life in some form but about 10 years ago it hit me on the head with such force that I was unable to do function at all. It was like a fairy tale giant had taken his sledgehammer and was repeatedly smashing me in the face and then convincing me it was my fault that he was doing it. Nice eh?
 
I lost everything when depression came. I couldn’t work, I couldn’t concentrate, I couldn’t eat, I couldn’t sleep, I couldn’t see anybody, I couldn’t wash, I couldn’t laugh; I couldn’t remember who I was or what I was meant to be doing.
 
I was in crisis, but it was hard trying to convince myself I needed help. I felt I should be able to sort all this out by myself. None of my other male friends had depression, somehow, they were able to sort out any muddles they had in their heads by themselves, so what was wrong with me? I felt I wasn’t being strong enough or man enough. Real men don’t get depression I thought. If I was a ‘real’ man I wouldn’t be feeling like this, right?
 
When I started to feel suicidal, I went to Accident and Emergency because I didn’t know what else to do. I waited for 8 hours to be told that I was being ‘a bit sensitive about things’ and was given some Valium and told to see my doctor the next day. I told him how ill I was feeling, he sighed, like I had unnecessarily inconvenienced him, and reluctantly called the crisis team. I was prescribed anti -depressants and sleeping pills but things got worse, and worse and worse. And worse. After a month of being seen by support workers at home, and one more horrendous A and E visit, my life still felt at risk I went to psychiatric hospital for a week.
 
Now, psychiatric hospital is like a glamorous boutique hotel. Now wait, it’s really not, it’s the exact opposite. The staff wanted to help but were too busy and I was too scared. I kept to my room afraid to venture out into the communal areas. It was my necessary prison.
 
One afternoon, sitting on my bed (which was bolted to the floor) and looking out of my window (which only opened a few inches) I started to think about hope. No one had spoken to me about recovery, no one had said that there was any chance that things could get better. Only depression spoke to me, and it was shouting vile insults and telling me that I had no future. I suddenly realised that if I was ever going to get through, I needed to hear about hope.
 
When I got out of hospital, I went to see my psychiatrist.
 
“Where can I read stories about how other people manage their recovery?” I asked.
 
“Hmm.” He thought for a while. “I don’t think there are any.”
 
“What none?” I said.
 
“No, I don’t know of any. I tell you what, how about read this book, that might help.”
 
He handed me an enormous 500 page tombstone like book on depression, from an eminent psychologist.
 
“But I can hardly read a page.” I said. “There’s no way I can get through this. And anyway, I want to read something from other people with depression.”
 
Now thankfully sitting on my own bed at home, I thought, well if there aren’t any recovery stories, then maybe I need to tell mine and see if other people want to tell theirs too. What if other people wrote a letter to others experiencing depression, telling them that things can get better? What if I published these letters on a website for everyone to see? It couldn’t just be me that needed to hear that you could still live your life whilst managing depression could it? That’s how The Recovery Letters project was born.

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The Recovery Letters website has around 70 letters at any one time, from people around the world, different genders, ages and all types of depression. The letters are so powerful because they reach out to the person suffering and say ‘We get it, we know that indescribable pain, we know how exhausted you are, how hard it is to get up each day, we’ve felt that too, but you know what, it’s gets better, we’re living proof of that’.
 
In 2017 a Recovery Letters book was published. It was a World Book Night title in 2018, is on the Reading Well list for mental health, (where GP’s can recommend useful books to patients), it has been published in Welsh, recently in German and amongst other accolades, Cosmopolitan magazine named it was one of 12 Mental Health Books Everyone Should Read.
 
The impact of the letters has been incredible. People often write and tell me reading them has got them through the night, that they feel understood and less alone. They say that reading about symptoms and feelings that they thought just peculiar to them, have made them feel validated and less ashamed.
 
Repeatedly, people tell me the letters have stopped them from taking their own life. This always makes me cry because the letters saved my life too. 


The Recovery Letters

​
The Recovery Letters website: www.therecoveryletters.com
You can order from Amazon: ​
https://www.amazon.co.uk/Recovery-Letters-Addressed-Experiencing-Depression/dp/1785921835

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Mental Health Special: Frank Rivera talks about sarcoidosis and his mental health

7/10/2019

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​October 10 2019 is World Mental Health Day to raise awareness and mark this day we have published a MENTAL HEALTH Special supplement and are running a series of blogs
#WorldMentalHealthDay


​Frank Rivera, Sarcoidosis of Long Island, was diagnosed with sarcoidosis and talks to RARE Revolution about his experience of the disease and the enormous impact on his mental health

​I have a rare disease called sarcoidosis, a disease characterised by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs. With sarcoidosis there is no known cause or cure. They do know what accelerates the disease: heavy dust, chemicals, moulds and other environmental causes.  ​
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Frank Rivera
In 2011, I was diagnosed with sarcoidosis in New York. You see, in 2004 I was diagnosed with lung cancer and went through four years of chemotherapy and radiation while living in Florida. I was told I was in remission in 2008. Only to find out I never did have lung cancer at all. I was misdiagnosed. That happens a lot in the rare disease community, only they went that extra step of four years of chemotherapy and radiation. I say this part because the chemotherapy did help the granulomas from growing, but the radiation actually compromised my system so much that by the time I was diagnosed with sarcoidosis it was already in 75 per cent of my body, I was part of the 30 per cent of sarcoidosis patients chronically ill.
 
When I was diagnosed with sarcoidosis, I was told that being sick is 10 per cent physical and 90 per cent mental. When I heard that it took me aback. How can that be? Being sick is physical, isn’t it? So, it made me think.
 
What the doctor said to me next changed my life forever:
You have a choice in life! You can curl up in a ball and give up or you can be a fighter!
I had a choice. It was up to me to decide which way I was going to go. I decided right away to find a mental health counsellor, best decision in my life. I still see her now.
 
In 2012, I became a Rare Disease Patient Advocate
 
Why? I wanted to make sure nobody would have to ever go through what I did and to make sure that no one else would feel alone.
 
For several years I started out as an advocate that spoke to the government officials first, to raise awareness for sarcoidosis then I branched out for all rare diseases.
 
In 2015, I was in so much pain both physically and mentally. I was being told treatment after another treatment and nine surgeries later that I was not responding to any of the medicines they have used for sarcoidosis patients. That they were not giving up on me, but don’t know what to do with me at the same time. I started to get in a real dark place, just because you have a counsellor it doesn’t mean everything is going to be fine. You still must believe what you are saying to yourself and to others. Well I stopped believing it. In September 2015, I called my counsellor with thoughts of suicide. That is right Mr. Strong Guy was giving up.
 
I was the guy who was positive, the guy everyone called for advice and to pick them up. I called it: “The Tears of a Clown.” It is a song from the sixties I grew up hearing from my parents. On the outside I was smiling, but on the inside, I was falling apart. Yes, that person, ME, was ready to give up on life. I knew exactly how I was going to do it too. I had the opportunity to do it. I rationalised by saying I am being a burden on my family, and they would be better without me.
 
What made me make that call to my counsellor that day I truly don’t know for sure, but I believe that there were two main reasons, my wife and daughter. Another part of me believes I called my counsellor because I was my Mother’s child. She was sick for most of her life and most of mine and never gave up. I am not a quitter! I ended up going into the local hospital for a 72-hour watch, which basically means on suicide watch. It changed my life. It made me become more aware of not only my mental health but other people’s mental health too.
 
In the past two years in the sarcoidosis community of people I know, there have been about 100 sarcoidosis patients that have passed away from sarcoidosis or related illnesses. That is a lot of people, too many, but what makes it worse is I know in that same time about thirty of them committed suicide.
 
This isn’t just a sarcoidosis problem. This is a rare disease problem! When you are dealing with a disease that is hard enough, but when you are dealing with a disease that has no cure it sure can work on you mentally.
 
If there is one takeaway from this blog, I want it to be:
 
Don’t think you are alone or that you are too strong to seek mental health assistance!
 
You know what makes you strong?
 
ADMITTING YOU NEED HELP!

 
In April of 2018, I was told by a group of amazing specialists, both sarcoidosis and Parkinson’s that I have been reclassified from chronically ill to terminally ill. I have sarcoidosis in almost every major organ except my liver and kidneys. I was given a couple of months to live.
 
Guess what?? I am still here! You want to know why I think I am here? For me being sick is 10 per cent physical and 90 per cent mental. ​

About Sarcoidosis of Long Island 

​Sarcoidosis of Long Island is a charitable organisation providing emotional support and help finding medical assistance for those living with sarcoidosis.

It has grown into an advocating organisation to fight for the rights of people who have this rare disease. They work with local, county, state and national government officials to gain recognition and raise awareness for this rare disease.

Supporting sarcoidosis patients with a support group.

Partnering with other organisations to help find a cure.

More information can be found on the webiste: 
www.sarcoidosisofli.org/​

Please visit our Mental Health Services Directory for a quick reference guide to national and international mental health services.

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Signposting weblinks for: Mental Health Special issue 012(S)

4/10/2019

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Everyone's talking mental health, but are we really listening?
​and Mental health first aid

Torie Robinson, Epilepsy Sparks 
  1. https://www.mentalhealth.org.uk/a-to-z/p/physical-health-and-mental-health
  2. https://home.kpmg/xx/en/home/about/what-we-stand-for/inclusion-and-diversity/diversity-means-everyone/mental-health.html
  3. https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/#.XUrdK-hKiUk
  4. https://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-disorders/#.XUrdZuhKiUl
  5. https://www.mind.org.uk/information-support/types-of-mental-health-problems/bipolar-disorder/bipolar-moods-symptoms/#.XUrdfOhKiUl
  6. https://www.nybooks.com/articles/2016/11/24/86-billion-neurons-herculano-houzel/
  7. https://www.mind.org.uk/information-support/types-of-mental-health-problems/statistics-and-facts-about-mental-health/how-common-are-mental-health-problems/#.XUreDOhKiUk
  8. https://www.who.int/mental_health/en/
  9. https://www.time-to-change.org.uk/news-media/celebrity-supporters/alastair-campbell
  10. https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/#.XUrkK-hKiUk
  11. https://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-disorders/#.XUrkSehKiUl
  12. https://www.mind.org.uk/information-support/types-of-mental-health-problems/schizophrenia/#.XUrkYOhKiUl
  13. https://www.mind.org.uk/information-support/types-of-mental-health-problems/schizoaffective-disorder/#.XUrkduhKiUl
  14. https://www.mind.org.uk/information-support/types-of-mental-health-problems/personality-disorders/types-of-personality-disorder/#bpd
  15. https://www.mind.org.uk/information-support/types-of-mental-health-problems/bipolar-disorder/types-of-bipolar/#.XUrksehKiUl
  16. https://www.mind.org.uk/information-support/types-of-mental-health-problems/bipolar-disorder/types-of-bipolar/#.XUrkyuhKiUl
  17. https://www.epilepsysparks.com/epilepsy-learning/what-is-epilepsy
  18. https://www.epilepsysparks.com/epilepsy-learning/different-types-of-seizure
  19. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2730001/
  20. https://www.epilepsysociety.org.uk/mood-problems#.XUrl4OhKiUk
  21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229254/
  22. https://www.epilepsy.org.uk/info/treatment/surgery/adult
  23. https://www.epilepsysparks.com/torie_robinson
  24. https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/#.XUrmeOhKiUk
  25. https://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/#.XUrmh-hKiUl
  26. https://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-disorders/#.XUrmlehKiUl
  27. https://www.mind.org.uk/information-support/types-of-mental-health-problems/hearing-voices/#.XUrmpuhKiUl
  28. https://www.mind.org.uk/information-support/types-of-mental-health-problems/psychosis/types-of-psychosis/#.XUrmtehKiUl
  29. https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/symptoms/#RiskOfIsolation
  30. https://www.mayoclinic.org/diseases-conditions/compulsive-sexual-behavior/symptoms-causes/syc-20360434
  31. https://www.mentalhealthamerica.net/conditions/risky-business-compulsive-buying
  32. https://www.mind.org.uk/information-support/types-of-mental-health-problems/eating-problems/#.XZctwUZKiUl
  33. https://www.mind.org.uk/information-support/types-of-mental-health-problems/drugs-recreational-drugs-alcohol/#.XUrnTuhKiUl
  34. https://www.mind.org.uk/information-support/types-of-mental-health-problems/self-harm/#.XUrnquhKiUl
  35. https://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/#.XUrnhOhKiUl
  36. https://www.samaritans.org/
  37. https://www.mind.org.uk/
  38. https://www.epilepsysparks.com/Clearing-Out-The-Poop-Chute-
  39. https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(18)30227-X/fulltext
  40. https://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/#.XUroZehKiUk
  41. https://www.nhs.uk/conditions/stress-anxiety-depression/learn-for-mental-wellbeing/
  42. https://www.mentalhealth.org.uk/a-to-z/f/friendship-and-mental-health
  43. https://www.samaritans.org/


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