Teens With Incurable Conditions: How We Manage Our Health | On The Red Dot - Chronic - Part 2/4

[Music] with HTS when I get up from a lying or sitting position to a standing position I feel very dizzy I'm checking my blood sugar level and I do this before every meal so when I go to a new school I'll have to share my condition with the people around me [Music] [Music] yeah is it hard for you to ask your mom can go not really as long it doesn't affect my studies or like during exam period it should be fine for me in my think about for me to get permiss they concerned about my safety some injuries occur for hemophilia patient even if they never injured themselves they will have spontaneous bleeding which is happen very scary that's just one worry if something happens can he handle it I will be more comfortable like if he just don't go that far if something happens he can still push the wheelchair to him if go too far then cannot reach the biggest issue that comes in my condition is the unexpected injuries this injuries may happen anytime anywhere so I cannot like foresee that time I went I went with my sister to buy something and then half truth I she felt something big um my left knee the pain was like a stingl sensation I couldn't walk because the L was very Solen my sister called my parents to actually fatch me on the wheelchair back home I always had this wheelchair on standby at [Music] [Music] home I'm taking of asking my mom again today whether I can go out alone I think she's in a good mood I think I have a 70 80% chance of getting her permission to actually uh go out myself I'm more comfortable for J to go to the library because if anything happen to him he can actually get help easily I don't want him to actually wander around in the street doing nothing I'm still worried that he go out alone but I understand that now he's actually a teenage so I want to actually give him more freedom usually I will have more concerns than Jing's dad because Mother Nature she's more careful usually when a juming approached me I would say [Music] yes [Music] okay so for lunch I'm having this chicken curry rice from the Japanese food store H what's that that's my medical device so I can check my blood sugar levels put your blood on it then after it can S no look that's why I put this right very little Goa okay you just squeeze you squeeze right this actually scary see it's done now every day you have to how many times four what huh my r before meal so before my breakfast lunch dinner at night before I go to sleep the condition that I have is Type 1 Diabetes Type 1 diabetes is when your body cannot produce insulin and then you would have to inject insulin so that your body sugar levels W be too high and too low I think they were a little bit shocked after that they had a ton of questions what are you doing I'm checking this app what de it's like you can check your carbohydrate so for example I put Carriage chicken rice then right I need to put in the carbohydrates in my meter which is 85.2 now I will check this thing and just just my butt there's a needle inside is it you just need to change every 3 days can you shower yeah what do you think what are you doing this is how you're going to get injured well basically it's just having fun man I know when to stop and he knows when to stop what is this they four of us I guess it's like any sibling relationship sometimes we squabble a bit but at the times we get along here's Dominic in action doing some minor wiring work he's preparing the Chinese new yor Lance to be put up he's not defined by his condition and when people ask like oh who's dominate first will be like he's my brother you know and then hemophilia is really one of like the last things that you would bring up good [Music] [Music] job as a kid he used to get injured a lot more frequently so my parents would just rush him off to the hospital and a lot of his beds happen to happen at night I was very used to one parent staying overnight at the hospital and then the other parent staying at home with [Music] us as a kid he used to get injured a lot more frequently so my parents would just rush him off to the hospital I was very used to one parent staying overnight at the hospital and then the other parent staying at home with us I didn't feel so neglected or anything because my friends did a good job trying to like manage between Dom and us I think it's also because the AG capap between Dom and Esther is only one year a bit like a replacement in a sense so mean you literally say replacement not replacement it's like when Dom wasn't around I still had like EST to play with so I didn't feel so like left out or lonely a replacement what do you know about the condition a bit of a bio lesson all females inherit two x genes and males inherit One X and one y Gene in genetic cases because it's passed through the infected X Gene and boys are born with only one X Gene and so they would have hemophilia but girls on the other hand because they have two x gen so if only one X Gene is infected in that sense then they are just a carrier so there's a really low chance that girls can get hemophilia they need to have both X genes that have the hemophilia if not they would just be a carrier say I'm a carrier and I have two x genes one with the hemophilia Gene and one is a normal Gene I might pass on the hemophilia trait to my son if I pass on the mutated X Gene if I pass on my healthy X Gene then he would not have hemophilia in this case there's four of us but Fred our younger brother he doesn't have hemophilia what my mom did a preliminary test which rooted out that she was a carrier of Hemophilia so our belief is that his hemophilia was spontaneous chicken dance chick [Music] dance knowing about hemophilia and the possibility of such mutations happening I would also want to like get myself tested I was not born with pots I was perfectly healthy for the first 15 years of my life I started experiencing symptoms in sect Tre I was in girl Brigade in secondary school I was unable to do a lot of the physical training exercises I thought it was because I was unfit at the end of J1 I was on my way to school I suddenly felt feeling really dizzy and passed out but I was very fortunate in the sense that a pass by saw me when I woke up I told her I would make it to the hospital on my own my parents visited me in the hospital and they said it looked a lot like I was faking it to get out of school my parents have only came for one appointment during the diagnosis Journey my parents pay for my medical bills but they are not very involved in my medical care so I make a lot of decisions regarding my condition on my own I didn't have the support I thought I would get from my parents there were times where I felt very lonely and I was frustrated in the process of getting my diagnosis I have went through multiple medical [Music] tests even after all these tests no doctor could tell me what my diagnosis was because I didn't know how to manage it it made my condition a lot worse during your FL everything hurts your heart rate is consistently very high your hands tremble a lot so I was stress worried depressed a little every few months I would have a flare and it would land me in the hospital which was frustrating because even if I went to the hospital I didn't know what was wrong when Costas was 5 years old my husband and I we were due for an incentive trip to go to uh New Zealand we have a call from I think my brother that con is having some issues with a leg her leg is swelling then there's a redish h shiny I had no idea what happened so C was brought to hospital she was admitted for the day in hospital she was diagnosed as HSP so it's more of inflammation of blood vessels that cause some Buble patches that develop we just thought that you know HSP will recover by itself yeah it's a matter of time but I noticed that concerns do wake up to go toilet or then a few times she wet the beit and she's able to wake up in the middle of the night to finish up two huge water bottles then we realize that something is not so right anymore my husband found out that hey could it beat you to something linked to diabetes so we asked her to do a blood test and the nurse told us if there's anything important then she will call us so like praying don't call me don't call me but the call came so when the nurse told me that please quickly um send your go to A and E for quick treatment her blood glucose level was very high they told us that she needs to be injected insulin to bring down the glucose level and we are told that she's diagnosed to be type one diabetes we were uh quite surprised and shocked that hey you know why is this happening to her especially to a young girl I'm not sure where she got it from because it's not genetic my family lineage and his doesn't have this condition when the doctor mentioned that it's going to be lifelong yeah it broke our hearts today I got back my hba1c results it's my average blood sugar reading for the past three months the previous time I took my hb1c test I got 7.2 but this time I got 7.7 I'll try my best to ensure that I limit my sugary food intake and ensure that when my blood sugar reading spikes I inject myself with some insulin starting CCA meaning longer school hours and this means that I'll have to take more meals in school so when I take more meals in school I have to calculate all the carbohydrates and ensuring that I inject myself with the correct amount of insulin [Music] I'm going to the real City uh library today yes I'm very excited today y hey byee bye okay I'm going to take the bus and then change the train to go to Ocean Park and then go change to nor fre to have a fight so yes I'm finally a [Music] Vil I'm very happy and uh quite P myself out that get to r on my own I'm actually uh quite confident that if injuries occur during this trip right then I can handle it myself course I have a cold spray and then there's a lot of seats around here so I can take a rest so I'm kind confident that if something happen I can manageing myself how is the populations coming along it's bad honestly it's bad so I'm getting some noser along with it would you say you get it once a a day four five times a day maybe about like yeah six seven times a day Vanessa was referred to me because of the palpitations when she presented to me I realized she was extensively investigated by multiple Physicians all of this test results were essentially normal what was not looked into was the possibility of postural athetic techi cardia syndrome or pots for short pots cannot be cured but it can improve with time and certain interventions I was relieved as so because you know finally if I have a diagnosis I can get treatment it was an actual medical condition but I was scared too what kind of implications because at the point of time I was in theuring already sometimes where I'm just like why me to have a medical issue play you when you're so young and to have your entire career possibly be destroyed right is yeah frustrating certain exercise regime can help you there are a lot of exercise that you can do now often it's a struggle with patients if they try to do this on their own okay get physiotherapists involved professionals who can arrange a program for you okay all right prepare yourself for the prophylaxis oh I'm now undergoing this treatment called which is a factor therapy this treatment will help to prevent bleeding episodes that will happen to me I think it's quite effective now the injuries that happen to me is not that often now maybe once in a few months okay okay a few years back before we started on this long acting factor I actually have to go to the hospital twice a away to get the injection it actually wasted some my time around 3 years ago I switched from injection at the hospital to home infusion switching to the long etic factor I will say one the benefits is saing B okay you squeeze and let go can I need to see yeah yeah yeah show time the angle higher higher a [Music] bit okay Brea in hold go okay let go [Music] is [Music] okay uh reading [Music] okay give me a G [Music] try ready okay read oh okay okay okay so is here I think so yes read [Music] oh [Music] no choice to move up because four tries [Music] really because of the unsuccessful Fusion so we have toiv it to the professionals it's better to stick to the schedule because the longer you drag the less the affect with the medication so his risk of what level complications will be much higher I felt quite disappointed whole purpose of this whole infusion was so that I to go to hospital you know we droke around the house calling it Liquid Gold this is 3 ml of H Libra and it cost $31,000 without subsid

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Length: 22min 58sec (1378 seconds)

Published: Wed Mar 27 2024