TEENAGERS WITH EXPERIENCE

Asthma is a condition that is diagnosed at many different stages of life and at many different levels. However, my experience with asthma has changed over the last year, and this experience has shaped my understanding of the condition.
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Asthma was something I was diagnosed with at a very young age. According to the series of events, I was asleep and very breathless and ended up in the hospital with an inhaler and a teeny brownie treat every time I took it. 

For a while after this, I was mostly fine. 

Many years passed, and the only part of me that asthma affected was my ability to participate in sports and sometimes my ability to play the flute, as it took more breath to perform. 

But last summer, until the beginning of November, I experienced a significant drop in my iron levels, and my asthma fell with it. I found myself unable to walk to classes at university anymore without needing to sit down and take my inhaler every five or ten minutes. And even when I was showering or sitting down, I found myself breathless and tired all the time.

I went back to the doctors multiple times and complained until someone gave me a new inhaler and made me track my peak flow. I also started taking iron at the same time, which invariably helped too. 

I began to notice changes very slowly. At first, I was still breathless walking and shopping, but I began to gain my life back bit by bit. By the end of March, I began to feel almost normal again, with asthma here and there, but with higher iron levels and the new inhaler, I felt like myself. 

But while I feel better now, I think it’s important to share some of the things I do to keep my asthma under control.

• Take my inhaler the amount prescribed to me. It’s so important to start at the beginning and curb the asthma before it grows.
• Practise breathing techniques. 
• Get regular exercise.
• Wrap up warm in the winter. This includes a scarf, which protects your neck and throat from becoming exposed to the cold weather. 
• Try and manage significant changes in temperature by doing breathing exercises, sitting down and making sure I open up my chest and ribcage to increase breathing capacity.
• Track any changes on a peak flow chart.
• Go back to the doctors if anything changes.
• Make sure I have supportive people surrounding me, who listen and help if any changes to my asthma happen. 

With a caring community and regular check-ins with the doctors if there are any changes, I can manage my asthma at home and participate in life as much as I did before it impacted me significantly. 

Learning how to be supportive is also an important part of helping someone living with a chronic condition like asthma. Support can look like researching how to support someone having an asthma attack or asking them what best helps them and who to contact if needed. Even listening to them talk about their experiences can be a helpful and kind way of being supportive.

Whether for a chronic or short-term condition, mental or physical, millions of people - including myself - take prescription medications daily. Often, people put little thought into it. Their doctor gives a prescription, they pick it up, follow the instructions, and move on. However, I never had that experience. As someone with multiple chronic conditions that are both mental and physical, I have had to deal with medications not working, adverse reactions, drug interactions, medical history barring me from taking the most effective medications, and even different versions of the same drug having wildly different effects. Managing prescriptions is not always as easy as popping an Advil - which is often done carelessly, especially among American youth. Here I will share four tips for managing prescription medications and finding the right medications. 

1. Do your research

Despite all pharmacists recommending that you read about your medications before taking them, many people fail to do the most basic research. When you take medication, you most likely will need to change or limit something in your life - certain foods or drinks, alcohol, caffeine, or certain activities. Even something as light as Allegra interacts with grapefruit. Grapefruit interacts with so many meds, if you’re on any it’s better to just avoid it altogether. 

When researching, get a sense of how your meds work, and what side-effects can occur, and check for interactions with other medications you are taking: prescription or over the counter. If there are multiple medications you could take - say for a condition like ADHD which has short-release stimulants, long-release stimulants, and non-stimulants - compare them to each other. If you are unsure where to start your research, there are some helpful links at the end of the article. Additionally, remember there is a difference between different generic versions of a medication and the equivalent brand name versions. The active ingredients may be the same, but the non-active ones may differ and can affect people differently. 

Most importantly, make sure you know exactly how to take your medications. Surprisingly, many people take their meds incorrectly. From not following the dosing schedule to not taking the meds with food when you are supposed to, there are many ways to take your meds incorrectly. I once made the mistake of abusing my rescue inhaler to the point of it almost being useless. Had I done my research sooner, I would have known that the effects of albuterol weaken if you take it too frequently. I called a nurse who urged me to go to urgent care, where they diagnosed my asthma and prescribed additional medications to get my symptoms under control. 

2. Listen to your body

Medications can have nasty side effects, some of which can be dangerous. Many side effects are listed on the packaging and are available online, but sometimes our bodies react to the medication differently from what is expected. Before starting medication, try to get a good sense of your physical baseline - common side effects affect digestion, cognition, awakeness, appetite, heart rate, and others. If you know what medication you will be taking, focus on the bodily systems that are most likely to be affected. Then, when you take your meds, pay close attention to how you continue to feel. If something feels off, reach out to your doctor or pharmacist right away - even if what you are experiencing isn’t a listed side effect. 

As part of treatment for my allergies and asthma, my doctors tried a very strong medication as a controller. The active ingredient in the inhaler they prescribed me is the same as Flonase, which I used regularly without. However, days into using the inhaler I became severely depressed. I hadn’t noticed the drastic shift in my mood, but luckily my mother was always looking out for me and told me what she noticed about my mood. Once I stopped my inhaler, my mood instantly went back to normal. 

3. Be patient, don’t make too many changes at once

If you are like me and are on multiple medications or managing multiple conditions, it can be difficult to figure out what to do when something is off. You may not be able to tell which medication is causing it, or if it is an interaction. It is tempting to try everything at once, but doing that means that you will not be able to figure out what is causing the issues. Some medications can take up to a month to work properly, too. In this case, it is best to work with your care team to carefully plan any adjustments to your meds. 

I recently had to deal with this while managing my birth control and ADHD medications. Due to insurance issues, I had to switch pharmacies. On the generic version of my medication at the new pharmacy, I had more physical side effects and new mental side effects. The side effects were interfering with my life and did not fade away. At the same time, my birth control started to have less effect on my PMDD symptoms. After discussing it with several of my doctors, I switched my ADHD medication to the brand name and planned to shift birth control several months later. Luckily, switching to the brand name made a significant difference. Though more expensive, I am no longer bothered by the side effects of similar generic meds. 

4. Remember that medication is often not the only treatment

If finding the right medication for your condition gets too difficult or costly, see if other treatments work for you. Medication, like any treatment, is supposed to help you, not hinder you. Sometimes changes in physical environments, accommodations, therapies, dietary changes, and other lifestyle changes can be just as effective as prescription medications. For psychiatric conditions especially, since the medication is affecting the brain, the many possible side-effects often affect other systems in the body. Non-medication treatment also encourages greater awareness of your condition. Most times, you will not be treating your condition with medication alone anyway - make sure to not neglect the other paths to care. 

I tried to keep my advice as non-specific as possible while still informative. Medications are useful for a wide range of conditions, and millions make use of them daily. Hopefully, if you are one of those million, you now feel more prepared to manage this part of your life. Medication is not something to be taken lightly. It is extremely powerful and can easily cause harm if not used with caution. However, when used properly, medication can help us be free from the conditions that limit our lives. 


https://www.drugs.com/ is an extremely useful site for finding information about side effects, drug interactions, dosing information, and how to take your medication. It is extremely extensive compared to other sites I have seen. 

https://www.nhs.uk/ is a generic site but has pages on many prescription medications that give a lot of the same information as drugs.com. It also includes information on how the medications work and all the information is presented in a very reader-friendly manner. ​

The UK government has proposed significant reforms to disability benefits, aiming to reduce welfare expenditure and encourage employment among individuals with disabilities.

These measures have sparked considerable debate regarding their potential impact on the disabled community.

At first, when you read that, you think this could be a good thing, that it might encourage more young people who don't claim benefits. They might think it's encouraging rather than claiming benefits.

But, what about the other side of it? People who have disabilities that stop them from working? Did they ask to have these struggles? I think not!

I can understand that the possible purpose of this could be to stop people who are not disabled from claiming benefits. But why should the people who are disabled have to suffer anymore? There are many other ways to go about doing this, such as having a more structured program to determine who needs these benefits to help them live. 

To understand more about why the government is making this decision, I decided to read some articles about it. The more I read, the more it pushed me to stick to my opinion that it was a bad idea. 

One of those reasons is a statement I read from Labour leader Sir Keir Starmer, “The necessity of overhauling the sickness benefit system to prevent a wasted generation of young people”. 

When I read that, my first thought was, do they think that the current generation is a waste? If that’s true, then why don’t they provide more support for people and then we can resolve two issues in one. 

Charities and backbenchers express concerns about the potential adverse effects on disabled individuals. Sixteen disability and poverty charities have warned that cutting disability benefits could have "catastrophic" consequences, urging the government to prioritise meaningful reforms over arbitrary spending cuts. - Source from The Times.

This is where I wanted to add in how I will be affected, just to give some insight into one of the millions of people’s lives that are going to be affected by this choice if it goes ahead. 

I suffer from non-epileptic seizures, also known as functional seizures or dissociative seizures. This is NOT epilepsy as many would think or assume it to be. And because of that, they assume that because it’s not epilepsy, it isn’t a disability and won’t stop you from working.

In my eyes and many others, it is a disability, and yes, it can stop you from working. For example, I cannot drive as my seizures cannot be helped by medication like they can help people with epilepsy. 

My brother was diagnosed with epilepsy a few years before my seizures started, and he went forward to get the medication, and now he is out living his life, has a job and can drive and travel. 

That’s what I long to have, just to be able to go out for a drive and get away from reality for a bit. Going to unique places that you can’t get to with a bus or train, or having to rely on family and friends to give you lifts. 

One of the many reasons people with functional seizures cannot work is that the seizures occur suddenly and without warning, making it difficult to maintain a stable work routine. Jobs that involve driving, operating machinery, or working at heights become especially dangerous.

As the government moves forward with these reforms, it faces the critical challenge of ensuring that efforts to reduce welfare expenditures do not disproportionately harm some of society's most vulnerable members.

To help this, we can write to our local MPs to help open up a conversation about the current problems we face as a nation. We can engage with community organizations, advocacy groups, and representatives of vulnerable populations to gather their input and insights. This can help in designing reforms that are more inclusive and less likely to cause harm.​

A hidden disability is an umbrella term to capture a spectrum of disabilities that mainly affect the brain. Let me tell you about how my hidden disability has not only changed how I live forever, but also has shaped me into the person I am today.
At age 16, while on holiday in Florida with my family, it took approximately seven minutes for my life to change forever: I had my first ever epileptic fit. 
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I had never suffered any form of disorder relating to epilepsy previously and at the point I have developed the condition I will be fighting to keep it under control for the rest of my life. My first ever seizure was an interesting experience to say the least… I remember two things from the experience: arguing with the paramedics that “who is the Queen is a stupid question” and asking my Mum what theme park we were visiting that day o, yes, in short the condition does have its lighter moments. However, in retrospect this was one of the scariest moments of mine and my family’s lives. 

Picture the scene: you are enjoying a holiday and 24 hours later you are watching your son/baby brother being diagnosed with a condition he never knew he had and you didn’t know how to deal with.

Like most disabilities, both hidden and visible, epilepsy has affected me physically. It has also taken its toll on me mentally. I cannot drink due to my medication and for many years this made me feel excluded. I thought it made my 18th birthday feel insignificant and on more than one occasion I would not be invited on nights out because I am “boring” because I don’t drink. I have also never been able to learn to drive up until this year and that was without a doubt a knock to my confidence. However, if I could go back and tell my younger self and any kids here anything, it is that you don’t need to have a drink to have fun; you just have to surround yourself with the right people. 

Surrounding myself  with the right people means my day to day life is now incredibly boring and my condition is well under control. I have wonderful friends, family and a consultant who has struck gold with my medication… big up Dr. Steiger. I know I will never be cured and it does dawn on me from time to time that I am fighting a somewhat invisible enemy, but I like to think I embrace that.

Epilepsy is a condition that can strip you of your dignity, therefore embracing what comes at you is really your only option. I have been found in some states that could be described as questionable following seizures… conditions that I am very much sure I am not allowed to talk about in this article. However, in a strange way, for me at least, the strange injuries and downright weird incidents have helped me build my character; they give me stories to tell and jokes for people to laugh at. 

I want people to be able to talk about my condition and it gives me great pride to be writing this article because it gives epilepsy a voice. I want people to embrace having discussions about disabilities both hidden and visible.
Danny

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‘Can you please repeat what you want to say again?’--- 

I have to hear this question usually every day. My words spread out when I speak fast- mainly because I am excited or nervous. At that time, no one understands my words- it’s obvious. So I don’t hold any grudges towards people if they say they didn’t understand my words or I have to explain to them again slowly. But I feel guilty or depressed inside because I can’t always make people understand my words nor I can speak slowly. There are many causes of speech impediments or disorders. I guess my one is due to respiratory weakness as I have a dust allergy for which I catch coughs and colds very often; so I can’t speak long sentences sometimes as I can’t keep my breath for long. 

When I was young, I couldn’t talk clearly because of my disorganized and misplaced teeth. Some of my cousins used to ask why I am like this. I was really sad and used to come to my mom crying. She understood my feelings and tried to talk to my dad about fixing my teeth, but he didn’t listen to my mom. He said that I was too small to get teeth braces or any other procedures. So I had to grow up listening to people talking about my unclear speech behind my back. I did get teeth braces after turning 16. After 2 years of patience, my teeth got fixed, but still, my words remained unclear as my lower jaw is slightly misplaced. I put my heart and soul to fix my speech impediment but still, I feel frustrated and insecure about what people may think about me. But I did try some tips for improving my speech-

1. Try to use small sentences or phrases by breaking up long ones. You can easily speak slowly using small sentences and it’ll be clear.

2. Some mild speech disorders can be treated with speech therapy. I didn’t do therapy because I believe I don’t have a disorder, it’s mainly due to my slightly displaced jaw.

3. Though I didn’t do therapy, I tried some breathing exercises which really helped me.
 
4. Try not to speak when you are excited or angry as it will make the sentences more unclear and you may become frustrated if anyone asks you to say the words again. Try to make yourself calm before talking to someone in excitement. 

How can you help someone with a speech impediment or communication problems?

1. Be patient and don’t rush while listening to the person. Try to focus on what the person is trying to say. 
2. While talking to someone with a speech impediment, remove distractions so that you can listen attentively.
3. Try to stay on one topic and don’t ask too many questions at once. Try to talk naturally, it will be comfortable for both of you.
4. Don’t avoid the person with communication problems. Try to make conversation with them about topics both are interested in. Because the more they practise, the more they can improve their speech. 

Resources on Speech Disorders:
The following resources may help those who are seeking more information about speech impediments.
Health Information: Information and statistics on common voice and speech disorders from the NIDCD
Speech Disorders: Information on childhood speech disorders from Cincinnati Children’s Hospital Medical Center
Speech, Language, and Swallowing: Resources about speech and language development from the ASHA

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