Lymphoedema Association of South Africa

Patient's Corner

Join our first virtual patient support group

8th June 2024

Free

You are NOT ALONE. Meet other lymphies, read their stories!

Hi my name is Nathalie Kabeya!

Nathalie Kabeya

I have secondary lymphedema from lymphatic filariasis. 

I am originally from the Democratic Republic of Congo, which is where I contracted the disease. I noticed the symptoms at the age of 13. In DRC, I went from hospital to hospital hoping for a diagnosis. Unfortunately, I only got a diagnosis 6 years later in India, where I also received treatment:

  • Hetrazan — a medicine to kill the parasites causing lymphatic filariasis and

  • Hydro-liposuction — a procedure to remove the fat deposits in my legs.

After my treatment in India, I tried to educate myself on lymphedema, but the information available was not enough. All I knew was to wear my stockings to reduce the swelling. My doctors could not help, so I felt lonely and misunderstood. This caused me to avoid talking about my lymphedema for so long. 
9 years after my treatment, I finally decided to learn more about lymphedema and share my knowledge. I decided to look for people who know what it is to be a lymphedema thriver and help those still in the dark. This is why Lymphedema Talks (https://lymphedematalks.com/) was created. — The goal is to improve the quality of my life and of those suffering in silence like I was.

Hi Im Lindy Kruuse

I have primary lymphoedema!

Hi Im Lindy. I am 36 and broken but beautiful! After nearly 2 years of searching for answers I have finally got a diagnosis and closure that my severe and chronic swelling in my left leg is Primary Lymphoedema. It was built into my genes in 1986 but lay dormant for 30 years until I started my family.

Triggered by pregnancy, aggravated by 2x c-sections and a DVT. This is not a diagnosis I want but one I will now accept and embrace. Join me on a personal journey to transform by body and ultimately advocate for change and awareness. In South Africa, Primary Lymphedema is not recognized as a manageable chronic condition that if left unmanaged by therapy and compression is absolutely debilitating (just go Google).

It is not a prescribed minimum benefit (PMB) with medical aids and they simply do not pay for the vital support. The physical and mental stress is enough on its own but then throw in the financial stress….. It’s disgusting and unfair! But I am so lucky to have the village I have and cannot thank them enough for their support. Watch this space as I share my story, embark on this next chapter and ultimately act for change!

Lindy Kruuse

What is lymphoedema
Your FAQs:

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Lymphoedema is an abnormal, chronic swelling of part/s of the body caused by a collection of lymphatic fluid (including water and proteins) in the tissues below the skin. It occurs when there is a dysfunction in the lymphatic system. Lymphoedema is most commonly seen in one or both arms or legs, but may present in the face, body and genitals. It is a life-long, progressive condition, which cannot be cured, however can be managed – early intervention is optimal. It is for this reason that lymphoedema should be considered as a Prescribed Minimum Benefit (PMB).

  • ViEW OUR “FINA A THERAPIST” PAGE
  • Qualified lymphoedema therapists are essential for safe and effective treatment.
  • Therapists need recognized postgraduate training and HPCSA registration.
  • Medical aid coverage varies, with some funds only covering treatment by certified therapists under the Oncology Benefit.
  • LAOSA advocates for broader medical aid coverage, especially for oncology-related lymphoedema,
  • Funding for primary and vascular-related lymphoedemas remains limited.

Risk reduction and early intervention are important as high-risk patients are at lifelong risk of developing lymphoedema. High-risk patients include oncology patients who have had surgery or radiation to the lymph nodes, sustained trauma injuries, been diagnosed with a DVT, have recurrent cellulitis or diagnosed with a family history of lymphoedema.
Some methods of risk reduction of the affected limb besides meticulous skin care include:
• No drawing blood, vaccinations, acupuncture or taking blood pressure on the at-risk limb(s)
• Avoiding high impact sports, carrying heavy items or prolonged repetitive movements
• Avoiding exposure to heat such as saunas, steam room, sunburn
• Avoiding tight clothing, shoes and jewellery
• Wearing protective clothing, gloves or shoes e.g. when gardening or washing dishes
• Wearing compression garments prophylactically on flights, long car journeys or when exercising
• Avoid weight gain/overweight  

MLD is a gentle manual therapy technique that takes between 45–60 minutes to complete, systematically stimulating the lymphatic vessels, re-routing lymphatic fluid away from congested tissue towards healthy lymphatic regions of the body. Benefits of MLD include reduced pain, reduced limb volume, improved circulation and improved mobility and range of motion. MLD is effective as a stand-alone treatment but is most successful in combination with CDT. For optimal results in the acute phase (two to four weeks), daily treatment is recommended. In the maintenance phase, check-ups by a therapist are essential to monitor the progress and to provide support at a minimum, twice per year. Self-lymph drainage (SLD) is taught by the therapist to be performed daily by the patient/caregiver in the home setting to maintain the reduction of oedema achieved in therapy.

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Lipoedema

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