It was early 2019 when I found out I had Beta Thalassemia Minor. It all started in the fall of 2018 when I got the seasonal flu. I was recovering from it, but the numbness, palpitations, and tiredness would hit me from time to time. This was the first time I experienced something like this. People used to tell me that my skin was pale during childhood, but I never felt tired and unenergetic like this.
I started visiting doctors, and they ran all sorts of tests for over three months. Finally, they gave me a report stating that I had Beta Thalassemia. They prescribed me Fol 3 and advised me to get a blood test done for my partner when I marry.
Life changed a bit for me after that. The once energetic teenager now had to be careful when the body got tired. Before 2018, I would cycle regularly, jog in a nearby park, and heck, I was in the NCC (National Cadet Corps). Now, I would get tired easily, and there was a particular pace that suited me. I gave up coffee and anything that contained caffeine as it would make my palpitations worse. My sleep pattern changed—I used to sleep only six hours, but now, I sleep 8-9 hours.
My Beta Thalassemia Minor symptoms included tiredness, palpitations, weakness, sensitivity to caffeine products, random sharp pain in the chest, long sleep hours, and shortness of breath. Along with that, I don’t seem to function well in hot weather—winters and cold weather suit me better. Gaining muscles and weight is hard work for me. High-intensity workouts don’t suit me as they make me feel exhausted, breathless, and light-headed. However, if there’s something where energy is released slowly and gradually, like cycling, then I perform well. I can easily cycle 40-60 km in a day with changing elevations. (Read more about the MTB trails that I regularly do around Dehradun city.)
With all that, life was happening. I started working as a freelancer, COVID hit, and the world shut down. The lockdown eased in 2021, and around the same time, my friend suggested going on our first hike—the Triund Trek. I didn’t turn down the offer.
Born in a village and brought up in Chandigarh City, mountains always fascinated me. I remember being in the village during summer vacations and going with my friends for cow herding, exploring new forests and mountainous parts.
We made the plan, but I was a bit skeptical about my condition. Beta Thalassemia is a variant of Thalassemia and is a blood disorder that reduces the production of hemoglobin.1 Hemoglobin carries oxygen, meaning Thalassemia patients have a lower oxygen-carrying capacity. Higher altitudes already have low oxygen, so there was a high chance that I would feel more tired or develop AMS at higher altitudes.
I started researching online and read multiple blogs on the condition, including insights from The Greek Creator and Gautam Patil, where he shared his experience attempting Mount Everest as a Beta Thalassemia patient.
After an overload of information, I let go of my research and went straight to Himachal. I took the bus to Nadaun, stayed one night there, and the next day, my friend and I left for Mcleodganj. The day after that, we were climbing up Triund.
It was a good experience. At the top, my heart palpitated a bit, and I felt a little tired and numb, but everything was under control. After the hike, I was happy, confident, and planning my next hikes.
Five months later, I went to Ali Bedni Bugyal, a much higher altitude than Triund. I noticed my body’s reaction and wrote everything down. Once I got the hang of it, I was unstoppable. Every other two months, I was on a new hike—challenging myself, making notes, and planning my next adventure.
Here’s the timeline that I followed:
- Oct 2021: Triund (2 days/ 2,850 m)
- April 2022: Ali Bedni Bugyal (6 days/ 4,500 m)
- June 2022: Gaumukh Tapovan (3 days/ 4,400 m)
- September 2022: Kedarnath (6 days/ 3,500 m)
- October 2022: Kuari Pass (5 days/ 3,800 m)
- March 2023: Manali and Nearby Hikes (10 days/ 3,000 m)
- June 2023: Dayara Bugyal and Bakria Top (2 days/ 3,600 m)
- April 2023: Prashar Hike (3 days/ 2,730 m)
- August 2023: Chandrashila and Badrinath (5 days/ 3,300 m)
- October 2023: Gaumukh Tapovan (5 days/ 4,440 m)
- November 2023: Belak Hike (2 days/ 3,400 m)
- December 2023: Gui Hike (2 days/ 2,900 m)
- August 2024: Mani Mahesh Cleanup (10 days/ 4,000 m)
Every other hike gave me more insight into my body and high altitude. It’s also true that two Beta Thalassemia patients might have different reactions to the same situation or conditions.
With that, below are my tips for hiking at high altitudes as a Beta Thalassemia patient.
1) Accept That Your Body Is a Bit Different
I used to get sad about the fact that I couldn’t do high-intensity workouts like others and that I got tired easily. During my first hikes, I would try to keep up with my friends and trek buddies. This not only exhausted me but was also dangerous. Later on, I started informing others about my condition and that I might stay behind. I made peace with myself and accepted I’m different and I can’t do some things others can.
2) Take Acclimatization Seriously
Acclimatization is the process of getting used to new conditions, whether temperature or altitude changes. Anyone who’s into hiking knows how important acclimatization is. I feel it’s even more crucial for people like us. Proper acclimatization gives your body the time it needs to adjust. At high altitudes, the body increases hemoglobin concentration to compensate for low arterial oxygen saturation (SaO2).2
3) Find it out
If you are starting with hiking as a Thalassemia patient, then it’s recommended to start slowly with high altitude. Go to places 1500-2000 m ASL and see how your body reacts. If you seem to be doing okay, then aim for a trek next time.
4) Know Your Pace
Every person is different, and everyone has a different pace. After doing multiple hikes, I know what cadence I have to maintain and what BPM range I should set my heart to. During your hikes, note down the things you felt, and experiment with walking slowly and fast. After multiple hikes, you will get to know more about your pace.
During my last push of Khada Pathar, Tapovan in 2023, It was really hard at the last point of the trek where I had to climb a very steep mountain. I tried to do my best but couldn’t form a rhythm between my heartbeat and steps. A few steps and my heartbeat will shoot up. So I started taking micro-steps. Like a very tiny step. It was so helpful and efficient.
5) Train Before The Hike
Training your body is important for anyone who aims to do regular hikes. We, as Thalassemia patients, need to put in extra effort to climb up the mountains. I, being skinny with low muscle mass, struggle with weight-carrying capacity. So I focus more on my core, thighs, and back. I regularly do cycling and it helps with my stamina. Your training can be different according to your body type. Identify your weaknesses and work on those muscles. A trained body will not only help you on the trail but also boost your confidence.
6) Pack the snacks
Maintaining energy levels is really important for me when I’m hiking. We people tend to get tired easily, and hence snacks are needed to maintain the nutrients and energy levels. For me, peanuts and raisins work the best. I tend to avoid chocolates and high-sugar snacks during my hikes.
‘A loss of nutrients and water can be more damaging to someone with thalassemia because the body’s delivery system for supplying new nutrients isn’t as efficient. So things like dehydration or a lack of a vitamin can take a little longer to bounce back from,’ – said r/mybodyisriot, and I think it’s true and makes sense. Proper nutrients and hydration are important. With all the snacks that I carry, I keep tablets of Fol 3 and Multiviatmins as well. After multiple hikes, you will find out the best-suited snacks for your body type.
7) Get a Fitness Band or Smartwatch
In the process of knowing your body and hikes, a fitness band or smartwatch is important in my opinion. Currently, I’m using a Wear OS Samsung watch to get the data I need during my hikes. I get much-needed data like hike distance, altitude, energy level, SpO2, blood pressure, and sleep time on my watch. These metrics are on my wrist when I need them. Data points like this can help you plan your next hike days ahead.
Looking back, every hike has been a lesson. While my condition presents challenges, it has also made me more self-aware and adaptable. If you’re a Beta Thalassemia patient wanting to explore the mountains, start slow, understand your body, and most importantly, never stop challenging yourself. There are a lot more hikes for me to cover, and in the process, I will keep learning and sharing my experience here.
If you have your story to tell as a Thalassemia patient who’s into hiking and trekking, then you can share it below in the comments or on our subreddit at r/thalassemia.
Happy Hiking!
References
- https://rarediseases.org/rare-diseases/thalassemia-major/ ↩︎
- https://pmc.ncbi.nlm.nih.gov/articles/PMC8979750/ ↩︎
More Reads Related To The Topic
- Clinical Manifestations of β-Thalassemia Major in Two Different Altitudes; Bushehr and Shahrekord
- Blood Pressure Changes While Hiking at Moderate Altitudes: A Prospective Cohort Study
- Effects of High Altitude on Sleep and Respiratory System and Theirs Adaptations
- The Physiotherapy Management of Thalassaemia and Sickle Cell Anaemia
- Is Traveling To A High Altitude Okay While Having Thalassemia Minor?
- Heights and hematology: the story of hemoglobin at altitude
- Beta Thalassemia Minor: What are your symptoms?
- High Altitude: How Our Bodies Adapt
- High Altitude Trekking – Thalassemia Forum
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