NHS 75th Anniversary

I couldn’t let this time go without sending a heartfelt happy birthday to our dear NHS on this 75th year anniversary. 

I was born prematurely in 1965 at the British Hospital for Mothers and Babies. This was my first interaction with the institution that was to go on and on saving my life many times over. 

As a child our wonderful NHS mended my broken bones and stitched my wounds, dealt with my nosebleeds and constant throat infections as well as removed my appendix. 

As a teenager I volunteered on what was then called a Long Stay Geriatric Ward. I loved it. The nurses on the ward saw something in me and encouraged me to apply for nurse training. I said I couldn’t because I’d already left home and didn’t have any exams to my name. They were a bit shocked by this but it didn’t stop them encouraging me. Their persistence paid off and at 19 years old I started training as a nurse.  

I was taught by dedicated medics about so many deeply interesting things. I became fascinated by how much the human body can take. I realised that even though I was young, my unconventional upbringing meant nothing much fazed me and I was happy to get stuck in no matter what. I was only on my second ward and in my first year when the Sister (Ward Manager in todays terms) took me into her office. She said she wanted me to sit with a dying patient so his wife could have a break. She explained she wouldn’t normally ask someone so early in their training to do this and I didn’t have to do it, but she thought I could. Well she was right. I held that man’s hand and also his wife’s as he slowly slipped from this world. It set up in me a passion to try and ensure people had a good death. I was also happy to do the last offices for any patients that had died. Some much more senior nurses didn’t like doing that and were astounded at my ability to do it. When I was 19 I looked like I was about 12 so that probably contributed to their amazement at how they saw me. 

Sadly the NHS was also there for me when I had an accident while on a night shift that sadly ended my nursing career. I tried to stop a patient falling over and managed to hurt my back so badly that I ended up on traction for 6 weeks

Those great experiences proved to be very useful when I went back into the NHS several years later as a Hospital Chaplain. I was privileged to collect the tears of many patients and their families and visitors as well as the staff. I became an integral part of the emergency bleep, pioneering a scheme where the chaplain attended crash calls, not to help with the patient, but to look after any family members. Sometimes when the death was very traumatic maybe a child or young adult I would also do debriefs with the  staff. They found this very useful. 

I was also fortunate to train senior nurses and junior doctors in the art of breaking bad news. All these things show the NHS is responsive to change and puts value into the importance of pastoral care for patients and staff as well as communicating well at these tough times. 

During my adult life there have been many amazing encounters with exceptional medics. One of them managed to do key hole surgery on me for a myomectomy. This procedure, to remove fibroids, was normally done with a big abdominal cut. 

When I was diagnosed with the rare blood cancer Myelo Dysplastic Syndrome (MDS) in 2000 the NHS really stepped up a gear. The dedicated teams I’ve been under have been exceptional in their expertise and knowing when to do what and at the right time for me. I had a Stem Cell Transplant (SCT) in 2016 and I’ve needed more and more care from the NHS since developing Graft Verses Host Disease (GvHD) and various complications from all the high intensity treatment. 

I have had sepsis innumerable times. Each time the NHS has helped me cheat death. I’ve had horrible side effects of no immunity by picking up nasty fungal lung infections, flu, pneumonia abscesses that I then needed surgery to fix the damage caused. A dedicated consultant who knows me well wasn’t due to see me on this particular clinic day but she saw me in the waiting room and told the new consultant to check me out properly as I didn’t look right. She was spot on. I had Superior Vena Cava Occlusion (SVCO). Once again the NHS stepped up to the plate and saved my life. 

I am not blind to what is going on around me in the NHS. I may be hard of hearing but I want to say, I see and hear the staff around me and I observe the struggle to do more and more with a greater number of patients and less staff.  You have my full support in the various industrial actions taking place by the different groups. The press bang on about the pay deals wanted, but I know it’s not just about pay even though you deserve more. I know it’s also about the unsafe conditions you are asked to work in at times. I know what hurts me, hurts you. So on this special 75 anniversary I want to say thanks for all you’ve done and continue to do. I’m an expensive patient. If I was in a country with private healthcare I’d be dead or bankrupt. I worry so much that we seem to be allowing privatisation by the back door. Healthcare should always be free. Any attempt to get people to pay for certain things will always disadvantage the poor in greater numbers as they often have more health needs. 

My grandmother died when she was 23. My mum was only 2. My grandmother, Emily, lived in the East End. She died from a common old chest infection because she couldn’t afford to pay for medicines before the NHS came into being. I include her picture below as I don’t ever want to go back to a system where a young woman dies needlessly because of a lack of funds. 

They say you never truly know the value of something until it’s gone. I hope we never have to find that out. Instead I want to say to all the amazing doctors, nurses and allied healthcare professionals, the cleaners and ward kitchen staff, the admin workers and the volunteers, keep up the good work. You are an incredible bunch of people and deserve to be paid your weight in gold. I can’t quite manage that but I give you a big golden smile sent with much admiration and respect. Thank you

Defending Kelly Holmes

 I write this blog with the sun streaming through the windows and creating interesting patterns through the blinds. It’s always good to take a moment and just appreciate the beauty around us. Sometimes we don’t look up enough. Some of the buildings above shops are amazing but if we don’t lift our gaze we don’t notice. 

People who follow my story will know I had a rough couple of months recently following an unusual reaction to an Aclasta Infusion. I lay on my couch and wasn’t even able to get in my own bed. Obviously having been so still for around 8 weeks, it’s taken me a while to get my strength back. Undaunted by this I’ve continued to move forward doing a bit more as the days go by. 

I was at Kings yesterday for my long day. I had my IVIG and then was seen by the lovely Victoria. She noticed how much better I seemed just from how I walked to her room. She asked me how my guts were and when was the last time I threw up. I said it was good and I’d only been sick once in the last month. I was still having reflux a couple of times a week at night that wakes me up chocking and during the day I regurgitate if I bend over having eaten. Apart from that all is good. She was pleased, as was I. Having some energy to enjoy the nice weather Is just great. 

Victoria and I spoke too soon. I woke up in the middle of the night and did one of my really large vomits with lots of undigested food. This carried on all night and into the mid morning. I also had a tummy ache and needed to go to the loo frequently. On top of this my temperature was 37.9. One more point up and I would’ve had to contact the team and be seen. 

Today I feel a bit washed out and I still have a jippy tummy! My temperature is slowly coming down. It’s so frustrating at times to take one step forward and two steps backwards. It’s impossible

to be consistent with any commitments and I hate being unreliable. Sadly I’ve had to get used to it as there is nothing I can do about it except plod on. For example yesterday I was meant to get a haircut. Instead I had to send apologies. Imagine though that it was something more significant than a haircut, like one of the occasional funerals I take. It’s a very hard line to hold in tension. 

One of the treatments that’s started recently for me is phototherapy. This is to help with my very itchy skin. I now go to Kings twice a week for this specialist intervention. The treatment involves being in a big light box, like a sunbed but you stand in it. The first day it was for a whole 10 secs. It takes me about an hour each way to get to Kings. So a 2 hour drive for seconds of treatment. Today I was up to a whole 29 secs. I will keep you posted if it’s effective. It just shows what a problem it is that I’m prepared to do it. 

I had an unpleasant and for me, an unusual experience recently. Someone who was an acquaintance and Facebook friend took exception to me posting about meeting Dame Kelly Holmes recently. She was upset at my acceptance of the honour system that harps back to the Empire. Politically I would agree with her. This is even more the case with the latest debacle of the people Johnson nominated. That said, I would never judge an individual. I have friends who have received honours and people who have declined or sent back. All points of view should be treated with respect. I was also accused of crying out for special treatment in supermarkets and with Irish Ferries and yet I could be with Kelly and others at the reopening of the ward I have been a patient on many times. This is despite the fact that I’m wearing a mask in all photos. When I go for a blood test or x-ray or attend another outpatient department I have to be alongside people that are not wearing masks. I don’t shout because that are making it unsafe for me. I accept that the world has moved on from the pandemic and left behind a lot of forgotten shielders. We have to navigate out way through gatherings now knowing that we can be at risk. I have to continue to be cautious but I also have to live. 

I think it’s great that Kelly uses the experience of her mum’s blood cancer and death to come along and highlight the issues for us. If she was a selfish honour grabbing person she wouldn’t be doing this. 

I have never blocked someone from all my social media platforms but sadly had to on this occasion. The person concerned couldn’t see that her spitefulness and judgment of me was uncalled for. I asked her why she thought she had the right to attack me and that as a Christian where was her theology of not judging others? To that I was told I was being patronising. 

It’s really sad that some people feel they have the right to attack others. It’s also a sad indictment of our society that it’s not ok to disagree with people without getting nasty and personal. My partner who had done nothing at all was also denigrated by this angry woman. I know it’s because she’s been hurt and the pain that’s trapped inside her bubbles to the surface sometimes. I tried to point out an alternative perspective but it was all falling on deaf ears and making the person more angry so I had to give up. All I can do is wish her well and hold her in the light. 

It reminds me of the story about the monk and the scorpion. A monk found a scorpion that had fallen into a rock pool and couldn’t get out. If it stayed there it would drown. The old monk tried to get the scorpion out but it kept stinging him. The young monk with him said “why are you doing that.? The scorpion will just carry on stinging you.” The wise monk said “it’s in the scorpions nature to sting. It’s in my nature to love. Why should I give up my nature of love and compassion just because I get stung?

It’s so true. We mustn’t let these horrible things that come along uninvited to steer us away from our true self and stop us from doing the right thing. It’s also worth noting that there is such a thing as tough love and sometimes people need their bad behaviour calling out but in a kind way. 

My encouragement to you all is to keep sending love and light into the world. At this point in our shared humanity we need it more than ever. 

World Blood Cancer Day 23

 A little blog to mark #worldbloodcancerday #thisisbloodcancer. The picture is me on my new swing in the garden. Behind me you can see a large red Kes. This was made for #makingbloodcancervisible. The art instillation was sponsored by @janssen and were displayed in Pater Noster Sq outside St Paul’s. The signs were built to the height of the person and on the flat side had a bio with each persons respective blood cancer and a bit about that person. It was a very effective and sobering experience to see all the names in the Square. 

The years that my body has been dealing with blood cancer and the effects of treatment have taken there toll. You can see the impact all over me in the scars I carry. The amazing thing is I’m still here. That’s only possible because my sister proved to be a match as there were no obvious matches for me on the registers. Did you know…?

• Blood cancer is the fifth most common cancer in the UK.
• Despite being the fifth most common cancer, blood cancer doesn’t have anything like the public profile of the other four common cancers. Unfortunately, our recent survey found that this low awareness means people affected by blood cancer are paying the price. 
• Because blood cancer doesn’t have the same profile as the other five most common cancers, people are less likely to be diagnosed quickly.
• Leukaemia, lymphoma and myeloma are ALL types of blood cancer
• Currently, four out of ten UK patients looking for an unrelated blood stem cell donor will not find their lifesaving match
• Every 27 seconds, someone somewhere in the world is diagnosed with blood cancer
• Blood Cancer Is an Umbrella Term for Cancerous Growth in the Blood, Bone Marrow or Lymph Nodes That Affect Normal Blood Cell Production or Function

two_individuals_hold_the_wbcd_sign.jpeg.webp

• The official symbol for World Blood Cancer Day is the red ampersand sign — which shows solidarity with those affected by blood cancer
• 4 out of 10 people in need of a blood stem cell donation worldwide are still unable to find a matching donor.
• Every year, over 70,000 people in need of a blood stem cell donation search globally for a matching donor outside of their family

So what can you do to help?

• Join one of the registers. It’s a simple mouth swab sent in the post. Anthony Nolan take people 18-30. DKMS take people 16-55. Donating if you are chosen is not hard either. It doesn’t involve and operation and is like an extended blood donation procedure as they take the stem cells from circulating blood. 
• Give blood. Many of us need blood, plasma and other blood products on a regular basis. We are only kept alive by the generosity of strangers. 
• Spread the word on social media so that more people know about blood cancer and what can be done to help. 
• Join MDS UK as a supporter or donate to the charity. It really is a small charity that makes a huge difference. 

It’s amazing that I’m still here after all these years. Many of the wonderful people I’ve met haven’t been so lucky. This world blood cancer Day make a difference. There can be no better feeling than helping another. 

Life’s been ganging up on me!

 

It’s been a while since I’ve written a blog. This one will be meaty because so much has gone on. Sometimes it’s hard to see things for what they are when you’re in the middle of it all. Hopefully writing it all out will help me to continue to process life, the world, the universe and what you do when it seems life is ganging up on you and winning. 

I have four beautiful grandchildren. The three boys are all over 6 foot. The youngest of these is 15. He thinks he is a man as he has a man’s body but those of us looking with the aid of perspective know that he is still a child. The following saga unravelled on a day where myself and my long suffering partner had just sneaked away for a few days break in my cousins granny annex in Nottingham. We were just relaxing and catching up when our daughter rang really very distressed. It turns out that this young grandson had been set up by a former girlfriend and he was beaten up by her brother and 3 of his mates. These 4 men jumped out of a car wearing balaclavas. They stamped on him and stole his very expensive trainers. They were disturbed by someone coming out of a nearby house. This poor woman called the ambulance and police. She thought my grandson had been killed as he was so still. She was very relieved when he moved his head. She took him into her house bleeding and crying. That woman is owed a huge debt of gratitude. I hate to think what would have happened without her intervention. 

When something like this goes off uninvited in the middle of a family, everyone is affected. It’s not just the person in the middle. The ripple effect means parents, grandparents, siblings, aunts, uncles, cousins, friends etc all become caught up in it. It takes reserves and resilience to work through it all. It’s important that the anger and fear have a voice but it’s also important to try and be objective and reasonable. 

As a family we have many resources we can tap into. We are fortunate in that respect. Despite all of that it seems there will be no criminal charges because the police didn’t gather enough evidence. This whole experience has made us realise how decimated the police service has become and how ineffective their communication systems are. One of the officers did a good job but despite all this, it seems the criminals will get away with it. In the meantime we, as a loving family, gather around each other and support each other. 

The next thing to come my way was that I had an MRI of my hips due to some increased pain. I hadn’t had the results of this when I had an appointment with the pain consultant. That appointment was to give me a trigger point injection into my sore and stiff neck. I’ve been complaining about my neck for ages. It’s often got knots in it that radiate down my shoulder blade and over my collar bone. At times it’s becoming a quality of life issue. While the Dr was preparing the injection she also checked the MRI as I mentioned I’d had it. She told me a small area of avascular necrosis had shown up in my right hip. This is not good news. It means that the steroids I’ve had to take over the years have caused a bit of my hip bone to die. It will eventually lead to a hip replacement. I was a bit shocked about this on one hand but not surprised on the other. I had my injection and went home to digest the news. 

It’s so important to give yourself time to process these things that come along unexpectedly. Sometimes just sitting with it and letting it wash over you is a way of becoming acquainted with the latest challenge. 

The following week I had an Aclasta Infusion. This is because I have osteoporosis, again caused by all the steroids I’ve had over the years. The osteoporosis consultant had delayed the infusion by a month as my calcium was a little low and she wanted to boost these levels as they help with the absorption of the infusion. 

The infusion is given via a drip once a year for 3 years. This was to be my 3rd dose. I’d not reacted to the other 2 so had no worries. The next night I woke up shivering and with a temperature. I threw up and had the most painful neck spasm I have ever encountered. I’m quite stoical and don’t show my pain externally. This was so excruciatingly painful that it made me yelp and cry out loud. 

I contacted my wonderful haematology team. They got me in and prescribed a short course of diazepam. This wasn’t quite strong enough. Then my wonderful haematologist and rheumatologist made a joint appointment to see me. This coincided with the junior doctors industrial action. I fully support all the medics in their protests. I can see with my own eyes how badly affected the NHS is by serial underfunding. It’s not safe at times now on ordinary days. Something needs to change. The consultants are often 100% behind their colleagues and they run the wards in their absence. Despite all that going on these two wonderful women and a CNS gave me their time and wisdom in looking into what was potentially going on. I was prescribed a different medication and once that was at the right level it began to have a benefit to me. They also organised an urgent MRI of my neck. How amazing is that! 

The MRI showed ongoing wear and tear changes. Also the previously seen neck fraction and upper back fracture. There was also a rib fracture too. There is nerve compression due to the collapsing vertebrae as well as a shift apart creating a bit of a step on the vertebrae. It’s no wonder it bloody hurts. 

It took me 5 weeks of lying propped on my couch before I could try my own bed again. It was the only was I could get comfy. My poor long suffering partner had never seen me like it. I never just lay still. I awkward try and do something even when I’m very weak. Once, when I had pneumonia it took me 45mins to make my bed. I was determined to do it. This neck pain was off the scale. I couldn’t concentrate. I was still throwing up. I couldn’t drive and my infection and inflammation markers which should be below 5 had jumped to 170. I felt bloody rubbish. 

I was given ongoing pain meds and regular appointments to keep an eye on me. Victoria, the haematology consultant was very close to admitting me. My weight was still not good and I was just getting frailer and weaker. 

I normally do all the driving as I like to and my partner likes to be driven. It was hard to have to rely on her and see her getting stressed at some of the traffic conditions as we made our way through London. She also had to listen to me wincing every time we hit a pot hole or a speed bump. 

On one of these check up days we got in the car and Maggie said to me “where’s your bike?” Regular followers of mine will know I recently got my 125cc scooter back on the road. I’d only ridden it a few times when something made me think again. I went to go in the bathroom and caught my arm on the handle. This caused my fragile skin to rip and flap backwards. I knew it would be foolish to keep riding the bike with skin that rips so easily and bones that could fracture with very low force. I had decided I would sell the bike and treat myself to a new big tele. At least that’s something I can still do. It was hard to make that decision.  I first started riding bikes when I was a kid in the woods. I got my first 50cc when I was 17. As I improved and had a bit more money so I got bigger and bigger bikes. Going from 50cc to 125cc then 250cc before halting at my SV650cc. This was the largest bike I could ride with my short little legs. It was possible because it was one of the few bikes you could lower the seat on. 

I’ve included pictures of my various bikes so you can see what I’m talking about. The bike for me was a symbol of my freedom. I could go anywhere and I wasn’t afraid to drive round Hyde Park Corner of take off through the New Forest. I felt as one with the bike and fluidly moved through the air. I’ve suffered from nausea for many years. When I am on the bike and have the air blowing through me, it takes the nausea away. 

I enjoyed turning up for services in churches that didn’t know me or at the crem and people would do a double take at this small woman on a big bike. You could see the nudges and the smiles when I undid my leather jacket and they could see my clerical shirt. I’ve always defied being put neatly in a box. 

So you can see that me deciding to give up the bike was a big thing. I had intended to go for one last ride to say good bye but some thieving scumbags took that away from me. To add injury to insult they also scratched my car getting the bike around it. I was gutted and really upset but had to continue to Kings for my appointment. 

Now a month on I think that maybe whoever took it did me a favour. At least I won’t have to try and sell it privately. I’ve also decided I will not be denied my last ride and will find a way to do this even if I just have to hire a bike for the day. 

A few days later Maggie and I were heading off to Kings again and this time the car wasn’t happy. None of the keys worked. I knew it wasn’t the key fobs as I’d changed the batteries recently. We had to make alternative arrangements and I would ring the RAC when I got home. 

The RAC told me they would be with me around 9pm. The length of the wait was due to me being at home and less of a priority. Sadly the fella didn’t turn up till midnight. The 12v battery was dead. The car is only 4 years old. This shouldn’t happen. It was being driven less frequently because of me still being propped up on the sofa and unable to do much. The mechanic jump stated it then poor old Maggie had to take it for a 45 minute run. 

Sometimes you really feel the weight of these problems and it seems that life is not being very kind. 

One of the hardest things that happened was my lovely friend Fiona died after her transplant failed. She and I had been MDS pals for 23 years. We were both sporty, women and young. Most people diagnosed with MDS tend to be older men. We didn’t fit the bill so we stuck together. For a while we were joined by another woman called Sharon. All 3 of us had different types of MDS and were committed to setting up a patient support group. MDS UK was the fruit of our labour. Once it was up and running I bowed out as I was raising my family and studying theology as well as working full time. Even just writing that now makes me feel tired. It almost seems incredulous to me that I had that energy and drive at that point in my life. 

Sharon was the first of us to need a transplant. Sadly there were no donor matches. Despite a brave campaign by her family, she died before a donor could be found. 

I had my transplant in Oct 2016. As regular readers will know this how not been plain sailing. The cancer may be in remission but the effects of treatment have ravished my body and I’m now very frail compared to how I used to be. 

Fiona lasted the longest before needing her transplant 2 years ago. I was desperate to attend Fiona’s funeral and honour my long term friend and MDS buddy. Problem was I was having enough trouble getting myself together to go to Kings. There was no way I could have safely got myself to Birmingham. 

I was so upset by all of this that I couldn’t even bring myself to watch the live stream of the funeral. I’m not a big why me type of person because I do think why not me. Thinking about Sharon and Fiona and being the last one still around makes me wonder why am I still here? What is there still for me to accomplish. These are all heavy questions that show a spirit in angst. Once again all I could do was sit in the pain of it and wait for things to improve. 

A few days later I had the strength to watch the funeral recording and see the love that went into sending my friend back to God or The Universe whatever belief works for you. Her loving husband and family did her proud. Thank you Fiona for you companionship over the years I’m proud to say you were a friend and I know you will reap the rewards of a life well lived. 

Another important event I missed was as my lovely friend Michelle’s inquest into her tragic death. I wanted to be there for her family as I know how hard these things are. Instead I was propped on the couch and all I could do was send messages of support. It’s so frustrating when you can’t rely on your body and you miss out on so much. I was always a very reliable person. If I said I was going to do something, I would do it. Sadly that’s not true anymore. I’ve had to learn to say I’d love to do that but may be unreliable due to long term illness. It’s a real frustration for me but there’s nothing I can do about it apart from own it. 

After the best part of being on my couch for 6 weeks I started to turn a corner. I was wincing getting up rather than yelping. I always wake up in pain. If I didn’t, I would think I was dead! Lol. I can manage the pain being a dull roar and that’s where I’m back to. I must confess though I’m slightly anxious that it will happen again I told the consultant that if I knew that walking over hot coals would fix the problem, I would do it. I was desperate. 

The last couple of months have been tough on me and those closest to me. I always hold on to the belief that tough times don’t last but tough people do. Sometimes all you can do is grit your teeth and know that “this too shall pass” 

I wouldn’t say I’m totally out of the woods yet but I’m able to do a few things again. Last week I was one of the patient reps at the opening of the newly refurbished haematology ward that I’ve been a patient on. Dame Kelly Holmes was the invited guest. She spoke movingly about her mum who had blood cancer. She used to come to Kings for her appointments. It was a lovely event and it was great to see the thought and care that had gone into the refurbishment. 

I’m at Kings again today. This time I’ve driven myself. Things are gradually getting back to what my normal is. My encouragement to all of you is just be brave enough to sit in the pain for a while. Sometimes that’s all you need to do and it will pass. “I love the light for it lets me see the way and I love the dark because it lets me see the stars.”

Rare Diseases Day 2023

 Today is Rare Diseases Day. I’m going to try and paint a colourful picture of what life is like when you are diagnosed with a rare disease. 

I was in my early 30s when diagnosed with the rare blood cancer MDS (Myelo Dysplastic Syndrome) This is an illness that affects more men than women and also occurs more in people 60 plus. I was a young fit football playing hard working manager of a women’s centre. I did not fit the typical picture. 

Many of us now understand the economy of scale when it comes to health now. The pandemic has created a mass of data that will be analysed for years to come. Because so many people have had covid all medics are aware of it and have treated it. They recognise it and they now go to techniques that they know work for people. 

Imagine now that you have an illness where a GP might see a case once every 15 years. They are not going to be so familiar with what to look for or how to treat it. For a few years prior to my MDS diagnosis I was prodded and poked by many great and good medics who just scratched their heads at me. Then within this rare diagnosis I’m also an anomaly. That has never left me. It means that often, no one knows why I’m the way I am. Many times I have a test and it comes back not quite right. For example I’ve been having treatment for osteoporosis caused by being on steroids for so long. I’ve had stress fractures caused by the illness in my back and neck. Despite gold standard treatment over the last few years to treat the osteoporosis, the illness has progressively got worse. The doctor looked at the results and said “this is highly unusual” I just sighed. She then organised some extra blood tests. Surprise surprise these have shown something unusual. 

I’ve had to learn to live in that space where you can’t know everything that’s wrong with you. You just have to live with it and trust that the right thing will become obvious at some point. I also have faith in the consultants charged with my treatment. 

Show your colours is the theme of this years Rare Diseases Day. I’m blessed to live in a time and a country that despite the rarity have kept me alive and functioning for nearly 23 years.  My colours get a bit dimmed at times when I feel rough and don’t have an answer to why but I refuse to let the darkness take over me. Instead I find myself always looking for the light. I’ve learned the more light you let in the brighter your world becomes. #rarediseasesday